https://effieparks.com/podcast daily 0.75 2024-12-19 https://effieparks.com/podcast/qvoice monthly 0.5 2026-04-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/ba924cf0-2a55-4bad-a7b1-743237c6c6e0/OUAG_IG-lanaM.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 269- Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio https://effieparks.com/podcast/startgenetic monthly 0.5 2025-10-24 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/7c7f5f69-d2e9-4fcf-af13-6a00586cdef8/IMG_20251015_182151+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 268- Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss https://effieparks.com/podcast/brainstorm monthly 0.5 2025-10-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/31b132ef-1a21-4243-9614-f2745185250a/OUAG_IG-mayaGos.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 267- Mini Brains in a Dish: Organoids and the Future of Personalized Rare Disease Medicine with Dr. Maya Gosztyla https://effieparks.com/podcast/emma monthly 0.5 2025-10-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/bbbc59ef-9031-4ea7-a4e5-bfdac3cc5021/-2973490879176034436.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 266- Healing in the Mess: Storytelling, Friendship & Finding Love - Author of The Unlikely Village of Eden, Emma Nadler https://effieparks.com/podcast/simonssearchlight monthly 0.5 2025-09-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4a9ae53b-c940-4029-9f3c-0141d4edddf9/Wendy+Chung%2C+Mi.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 265- 15 Years of Simons Searchlight: Dr. Wendy Chung on How Families Shape Rare Disease Research and Spark Aha Moments, w/ Wendy Chung https://effieparks.com/podcast/lemoncake monthly 0.5 2025-08-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/92a31cdb-ca07-4569-b793-ea55c8ce6619/OUAG_IG-amberChelsea.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 264- Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn https://effieparks.com/podcast/jeff monthly 0.5 2025-06-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/00e7795d-6255-46bd-9a47-2064181d98eb/OUAG_IG-jeffAllen.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 263- From Beast Games Champ to Rare Disease Warrior: 365-Mile Ruck for His Son’s Creatine Transporter Deficiency, w/ Jeff Allen https://effieparks.com/podcast/genedx monthly 0.5 2025-05-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/e6dd5a6c-86f9-4bb1-9d36-7de1a82f8e99/Subheading+%282%29.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 262- GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman https://effieparks.com/podcast/oryanhealth monthly 0.5 2025-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/ec12c048-88ff-4173-bc60-2a422976cdd6/IMG_20250417_092616.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 261- Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman https://effieparks.com/podcast/aplaceofyes monthly 0.5 2025-04-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/7be7cb33-07e0-4f15-a16f-d0c2154e76aa/OUAG_IG-heatherStraughter.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 260- Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter. https://effieparks.com/podcast/imaginepediatrics monthly 0.5 2025-10-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1b41b2b6-7310-485a-92bc-cee6afeb6044/OUAG_IG-taylorJody.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 259 - How Imagine Pediatrics is Revolutionizing In-Home Medical Care for Medically Complex Kids and Lightening the Load for Families - w/ Taylor Beery & Jody Copp https://effieparks.com/podcast/yammy monthly 0.5 2025-03-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/af48aca2-8485-4ae7-bc3c-ca13762e3523/OUAG_IG-susan.JPG Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 258 - How a Service Dog Helped a Child with CACNA1C-Related Disorder (Timothy Syndrome) Gain Independence – with Sue Bresnahan https://effieparks.com/podcast/pacbio monthly 0.5 2025-03-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/5c849bae-3801-43a1-9bf2-ad5c59956689/IMG_20250226_201252.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 257 - Unlocking Rare Disease Diagnoses with PacBio’s Long-Read Sequencing – A Conversation with CEO Christian Henry https://effieparks.com/podcast/fraser monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/729c1479-2acf-406b-ba30-e9c45461c0ef/5737911280262864234.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 256 - Prioritizing Caregiver Health: Gut Health, Stress, and Sustainable Wellness for Parents of Kids with Disabilities –Integrative Health Practitioner, Fraser Bridgeman https://effieparks.com/podcast/jamesg monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/18d2f051-85b7-4bc5-b48c-de79c56b4004/IMG_20250129_182005.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 255 - Breaking the Silence: Growing Up with Sickle Cell, Facing Pain, and Finding Strength Through Advocacy with James Griffin https://effieparks.com/podcast/lottie monthly 0.5 2025-01-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/0b266d97-508f-421f-9313-0b8a36e7ef28/5949728486382922600.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 254 - Lighting the Way: A Story of Love, Friendship, and Finding New Dreams - CERT1 w/ Samantha & Wesley Rogers https://effieparks.com/podcast/natalie monthly 0.5 2025-03-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1736995403554-JGW4CNSLD5F6CI8SZ4O5/6810844936157101163.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 253- Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer https://effieparks.com/podcast/ramin monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4671ae19-6650-4659-93c2-a8159d3f6793/-4512049598739284581.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 253- Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples https://effieparks.com/podcast/clcn6 monthly 0.5 2025-01-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d07efe1e-ceae-48bf-a22c-d4557863e048/Untitled+design+%2831%29.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 252- Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy https://effieparks.com/podcast/megan monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/070e3fad-6ead-4373-b693-c3d28f9db04a/Heading.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 251- Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet https://effieparks.com/podcast/grace monthly 0.5 2024-12-19 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/329fab0a-0ac2-419f-a089-bb3384eec1b1/The+Gift+of+Grace.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 250 - The Gift of Grace: A Holiday Heart-to-Heart for Caregivers https://effieparks.com/podcast/episode-248/dravetsyndrome monthly 0.5 2024-11-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/ad4f1bc4-ab9d-4d5e-a717-ac2f97855a6b/dravetpic.png Once Upon A Gene Podcast - Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community https://effieparks.com/podcast/episode-248/mindy monthly 0.5 2024-12-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f9fce5b7-a9d3-43b7-b32e-a8930511af34/mindy+henderson+once+upon+a+gene.jpeg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 248 - Ready for Take Off: Mission for Accessible Air Travel & Disability Advocacy, with Mindy Henderson https://effieparks.com/podcast/episode-247-hospital-survival-kit monthly 0.5 2024-11-11 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c66705d6-b515-4189-ab96-721defcdbecc/OnceUponaGene-podcast+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 247-Hospital Survival Kit - Advocating for Your Child Without Losing Yourself https://effieparks.com/podcast/episode-246-real-world-self-care-for-caregivers monthly 0.5 2024-10-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c66705d6-b515-4189-ab96-721defcdbecc/OnceUponaGene-podcast+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 246 - Real-World Self-Care for Caregivers - Tiny Wins, Small Shifts, and Taking Back Your Power https://effieparks.com/podcast/episode-244-beginners-guide-to-rare-disease-9brxy monthly 0.5 2024-10-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/afe15ee9-9466-474c-8bf0-226d6982a71d/Screenshot+2024-09-19+10.15.12+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 244 - Beginners Guide to Rare Disease - Wisdom from Others Who Have Been There https://effieparks.com/podcast/episode-245-colorado-mama-tribe monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/ada3f743-eaf4-48d2-b19f-ce3022202948/Screenshot+2024-09-26+10.19.37+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 245 - Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie https://effieparks.com/podcast/episode-243-chasing-glimmers-electric-love-disability-retreats monthly 0.5 2024-09-19 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/481a3821-3b60-42ff-8336-6df970a62849/Screenshot+2024-09-12+9.42.26+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 243 - Chasing Glimmers - Electric Love Disability Retreats https://effieparks.com/podcast/episode-242-choosing-friends-as-a-rare-disease-parent monthly 0.5 2024-09-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/5abd81a3-beb3-434c-aa40-f319afbf8a44/Screenshot+2024-09-05+10.18.24+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 242 - Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections https://effieparks.com/podcast/episode-241-chasing-glimmers-whats-glimmering monthly 0.5 2024-09-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/50e0540a-3e90-450e-87a1-f6ceed12a5ab/Chasing+Glimmers+Graphic.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 241 - Chasing Glimmers - What's Glimmering with Katie Lloyd https://effieparks.com/podcast/episode-240-yiwei-she-a-mothers-mission monthly 0.5 2024-08-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c7371eb8-7475-4992-a1b3-73b5070636e9/Messenger_creation_f164cc91-5304-4dae-a4df-323c88f55594.jpeg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 240 - A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She https://effieparks.com/podcast/episode-239-navigating-physical-and-emotional-stress-and-noticing-where-it-shows-up-in-our-body-as-a-rare-disease-caregiver-with-christy-foster monthly 0.5 2024-08-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/326300b0-a8c4-4306-81fe-821535dae6df/Navigating+Physical+and+Emotional+Stress+and+Noticing+Where+It+Shows+Up+In+Our+Body+As+A+Rare+Disease+Caregiver.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 239 - Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster https://effieparks.com/podcast/episode-238-where-the-glimmers-can-surface monthly 0.5 2024-08-08 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/bc5a9043-3ba5-4b12-865b-e333c6c0159f/Untitled+design+%2827%29.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 238 - Where the Glimmers Can Surface https://effieparks.com/podcast/episode-237-week-in-rare-2024 monthly 0.5 2024-08-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/5c78e3c4-f803-4ce9-8771-ae982bd4585e/967a27f5-7789-455a-a15b-0cde4cb800cd.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 237 - Join Us for The Global Genes Week In Rare https://effieparks.com/podcast/episode-236-rare-disease-research-insights-from-charles-river-labs monthly 0.5 2024-08-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/870cf56d-1063-49d0-9e3a-cdf1ca251f58/7c168949-e1b2-4bb4-922f-84c05d35d7e4.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 236 - Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer https://effieparks.com/podcast/episode-235-rare-connections-in-nmosd-with-craig-klein monthly 0.5 2024-07-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/170b454c-f180-497d-8fd2-6ff250d42691/265375d9-77df-4ca2-82c7-ce2cfd3ac364.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 235 - Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein https://effieparks.com/podcast/episode-234-finding-glimmers-for-a-happier-healthier-life-with-katie-lloyd monthly 0.5 2024-07-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a4c0e9e5-11b2-4c41-9852-8686f878603a/3eb82461-5e02-4d41-ab96-8831a0478dc1.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 234 - Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd https://effieparks.com/podcast/episode-233-enroll-in-project-find-out monthly 0.5 2024-07-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/eabd0ffe-c132-4f59-b662-a35393c46b2a/Messenger_creation_51563ea2-d05f-4c94-b271-58c3c7fe8b48.jpeg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 233 - Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing https://effieparks.com/podcast/episode-232-understanding-genetic-counseling monthly 0.5 2024-07-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/b2ae7d5e-832d-40dd-8bfa-010c60e42a97/OUAG_IG-a+%283%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 232 - Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC https://effieparks.com/podcast/episode-231-more-than-just-a-label monthly 0.5 2024-06-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/9c8425b9-15da-4221-8756-f9608c58b5bc/Messenger_creation_5dbafc72-b1ce-4cf8-8806-1d96f5aec5a0.jpeg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 231 - The Power of Genetic Diagnosis - More Than Just a Label https://effieparks.com/podcast/episode-230-balancing-rare-disease-advocacy-and-family monthly 0.5 2024-06-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/9cb6594a-f4b2-43b1-8247-2c71ff26397e/b656a7e8-4ad7-47a6-b600-ee725eb2278c.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 230 - Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick https://effieparks.com/podcast/episode-229-rare-disease-collaboration-on-a-shared-patient-registry monthly 0.5 2024-05-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4e156c26-3fea-42a8-bf56-41987befd81e/Mighty+Collaboration.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 229 - Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD https://effieparks.com/podcast/episode-228-strength-in-unity monthly 0.5 2024-05-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/3d1237d9-8428-4842-b320-39f721a26c45/c53a4881-ab55-41ee-bbb2-78b801c8b9ad.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum https://effieparks.com/podcast/episode-227-bringing-balance-back-to-the-language-of-disability monthly 0.5 2024-05-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/fd4843a2-3063-4e48-94f8-1ebd8f42ecf7/unnamed+%2814%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 227 - Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska https://effieparks.com/podcast/episode-226-from-classrooms-to-communities monthly 0.5 2024-04-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1713448118162-VKPMKGF03BRUZ4WHQQFY/Messenger_creation_689ea254-3c41-479f-8b86-d55f23929a2c.jpeg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 226 - From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland https://effieparks.com/podcast/episode-224-the-complicated-world-of-icd10-codes-with-ceo-and-co-founder-of-slc6a1-connect-amber-freed monthly 0.5 2024-04-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/6ca206ce-b39c-461f-be13-75a6adb04412/306a9336-aa0a-4732-be77-d95e39a96773+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 224 - The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed https://effieparks.com/podcast/episode-223-rare-epilepsy-network monthly 0.5 2024-04-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/2ee929ed-917f-451e-8594-6267d63ae447/IMG_20240327_193554.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 223 - Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio https://effieparks.com/podcast/episode-222-krabbe-disease-with-kasey-feldt monthly 0.5 2024-03-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4e1c0940-87a1-4532-b978-0c8938465a83/432247641_383956754554952_5683302960840972564_n+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 222 - Krabbe Disease with Kasey Feldt https://effieparks.com/podcast/episode-221-beginngs-newborn-genomic-sequencing monthly 0.5 2024-03-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/cdf4c47e-a51e-46ac-81b8-d6f6912ef380/431736469_440333321751374_8865616629601467629_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 221 - BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay https://effieparks.com/podcast/episode-220-a-call-for-action monthly 0.5 2024-03-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1709785738987-ESHGHA28U7LK5YR680P5/Storytelling+Graphic.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 220 - A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action https://effieparks.com/podcast/episode-219-genomics-england-clinical-lead-for-genetic-counseling-amanda-pichini monthly 0.5 2024-03-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a9bba5e5-ce4b-49a7-9af4-ef05fc5998e8/423686545_274614085659967_7007475362538183329_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 219 - Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini https://effieparks.com/podcast/episode-218-five-years-with-a-remarkable-child monthly 0.5 2024-02-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/74945ca3-e5b1-4ed9-b5e2-6fc2529b888b/428391348_766334228326232_7337496093036733255_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 218 - James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child https://effieparks.com/podcast/episode-217-uniting-science-and-hope-combinedbrain-and-its-quest-to-transform-research-and-treatment-for-rare-genetic-neurodevelopmental-disorders monthly 0.5 2024-02-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/8ddb5387-52e6-4d54-bd3f-93cf43a51436/420879308_422195340161283_5987315935018206001_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 217 - Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell https://effieparks.com/podcast/episode-201-rerelease-five-advocacy-aces-share-their-conference-commandments-szglr monthly 0.5 2024-02-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d7648087-2e3d-482f-9925-5a5cac0709ce/379661647_846226697235325_2153836044412199125_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 201 - Five Advocacy Aces Share Their Conference Commandments https://effieparks.com/podcast/episode-216-soundtrack-of-silence-love-loss-and-a-playlist-for-life-with-neurofibromatosis-type-2-nf2-patient-advocate-matt-hay monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/77817c5d-ad97-4dc9-9053-e718a1381094/-6817882691736830854.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 216 - Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay https://effieparks.com/podcast/episode-215-beyond-the-crossroads-dyzwb monthly 0.5 2024-01-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/7a04e7d1-e07b-44c2-9b73-3c6321d067a8/IMG_20240117_173111.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 215 - Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford https://effieparks.com/podcast/episode-214-the-power-of-brain-and-tissue-donation-in-rare-disease-research monthly 0.5 2024-01-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/61594ae7-c33b-40d6-9a21-4c35751768a2/411386866_1095794485191018_8070286949372439338_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 214 - A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari https://effieparks.com/podcast/episode-213-finding-strength-in-every-step monthly 0.5 2024-01-11 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/54214528-a035-441a-8aec-968b29266e15/411095390_200705176461032_8487019161309283833_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 213 - Finding Strength In Every Step https://effieparks.com/podcast/episode-211-the-juggle-is-real monthly 0.5 2023-12-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/88b0fc9b-0cff-4c5b-95bc-6873a2cd9cae/405855144_346865674795087_4062699271189546296_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 211 - The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia https://effieparks.com/podcast/episode-210-a-genetic-diagnosis-matters monthly 0.5 2023-12-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/24d263c4-0b59-48bc-971a-2596c16d8800/371086591_1156796108631427_2500198359812093373_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 210 - GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka https://effieparks.com/podcast/episode-209-a-leap-of-faith monthly 0.5 2023-11-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/badb01cc-77b0-496f-abc5-9e41a2442a98/400639745_908586570793656_4164941718794936362_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 209 - A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies https://effieparks.com/podcast/episode-208-turkey-soup-for-the-soul monthly 0.5 2023-11-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c415b717-ac39-4d03-8596-37066fa31427/399919284_360024296415962_2578021221572769030_n.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 208 - Turkey Soup for the Soul https://effieparks.com/podcast/episode-207-breaking-barriers-in-brain-health-with-tracy-dixon-salazar-phd monthly 0.5 2023-11-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700144904566-LWYTDW7RNS6JLB4QRY62/399987951_1853763295026691_4497334604057720838_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 207 - Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD https://effieparks.com/podcast/episode-206-policy-as-a-pathway monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/dbadfa6a-8c72-4c6d-ac4b-58dfbd3287f0/385534696_871956384174133_512949091933556563_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 206 - Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping-Schuetz https://effieparks.com/podcast/episode-205-mastering-the-art-of-the-supermarket-answer monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1b3dc6d0-8606-4d2d-b9b8-536a831af4ea/370090955_4167356686736877_7589769847336181910_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 205 - Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman https://effieparks.com/podcast/episode-204-from-heartbreak-to-hope-with-pat-furlong monthly 0.5 2023-10-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1698428340760-I1B204TKZOKNF1DBXP6E/OUAG+Oct26+-+LibSyn+Apple.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 204 - From Heartbreak to Hope with Pat Furlong https://effieparks.com/podcast/effisode-075-the-irony-of-it-all monthly 0.5 2023-10-24 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 075 - The Irony of it All https://effieparks.com/podcast/episode-203-kim-gilsdorf-and-daniel-defabio monthly 0.5 2023-10-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/3aca9c71-7482-49c6-a166-5e59fd5c9b6e/8959758000783194948.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 203 - These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio https://effieparks.com/podcast/episode-202-utilizing-child-life-specialists-y65lx monthly 0.5 2023-11-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1697117554805-61WZTA5HM77R2VZY2E85/368740472_1338326943485708_2332378099220670936_n+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 202 - Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor https://effieparks.com/podcast/episode-201-five-advocacy-aces-share-their-conference-commandments monthly 0.5 2023-10-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d7648087-2e3d-482f-9925-5a5cac0709ce/379661647_846226697235325_2153836044412199125_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 201 - Five Advocacy Aces Share Their Conference Commandments https://effieparks.com/podcast/effisode-074-syngap-cannonball-for-a-cure monthly 0.5 2023-10-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 074 - 2023 SynGAP Cannonball for a Cure https://effieparks.com/podcast/episode-200-fundraising-strategies-for-patient-advocacy-organizations monthly 0.5 2023-09-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1695904226011-CNY0LJ87UJ7728I0DAUI/382663172_755932579896332_677409547844110018_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 200 - Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens https://effieparks.com/podcast/episode-199-expert-insights-into-special-needs-financial-planning-with-mary-mcdirmid-from-special-abilities-network monthly 0.5 2023-09-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1695264265416-ZQWP3OMUD02NWBWEI7JW/-8722770525698033310+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 199 - Navigating as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network https://effieparks.com/podcast/effisode-073-the-unconventional-toothfairy monthly 0.5 2023-09-19 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 073 - The Unconventional Toothfairy https://effieparks.com/podcast/episode-198-advocating-with-heart monthly 0.5 2023-09-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1694658360758-WOGTVJWNGAU06FJF5GAD/377322019_1022887462191375_1280041497050175620_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 198 - Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody https://effieparks.com/podcast/episode-197-rare-disease-dad-chronicles-from-stay-at-home-fatherhood-to-my-mejo-co-founder-a-journey-through-costello-syndrome-and-parenthood-challenges-with-dadvocate-ryan-sheedy monthly 0.5 2023-09-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f687e0d7-1943-4efe-b50a-156d223deabf/373267411_1558196395007874_7437501727480369652_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 197 - Rare Disease Dad Chronicles - Ryan Sheedy https://effieparks.com/podcast/effisode-072-summer-camp-for-medically-complex-kids monthly 0.5 2023-09-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 072 - Summer Camp for Medically Complex Kids https://effieparks.com/podcast/episode-196-schools-out-for-the-summer monthly 0.5 2023-07-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 196 - School's Out for the Summer https://effieparks.com/podcast/episode-195-anecdotes-from-a-rare-disease-dad-of-an-adult-son-with-nr4a2-with-joe-henry monthly 0.5 2023-09-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/43d54c93-13eb-43c5-8645-1f6b18867eb5/362064978_793135435696287_7750268816972239490_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 195 - Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry https://effieparks.com/podcast/episode-194-a-guide-for-rare-disease-patient-advocacy-groups monthly 0.5 2023-07-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/09641b45-0e21-409b-9d10-d830412c6f47/6801972481486890686.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 194 - A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber https://effieparks.com/podcast/episode-193-claudia-gonzaga-jauregui monthly 0.5 2023-07-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/3c37b55d-30cd-4a77-9523-6f9da9b809da/6859119559579795006+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 193 - Claudia Gonzaga Jauregui https://effieparks.com/podcast/episode-192-from-the-rare-disease-bunker-to-many-more-birthdays monthly 0.5 2023-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1687401699611-PFO3LJ7X4P45YIFALEO6/IMG_20230621_215934.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 192 - A Tale of a Gene Therapy that Cures her Daughter with AADC Deficiency with Carolina Moreno https://effieparks.com/podcast/episode-191-a-fathers-day-special-amidst-the-storm monthly 0.5 2023-06-15 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 191 - A Father's Day Special - Amidst the Storm https://effieparks.com/podcast/episode-190-scn8a-rare-mom-gabi-conecker monthly 0.5 2023-06-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1686193763265-CUYFNJNWEZ22LR2AWP1H/352852597_681648937103938_5651131763492785952_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 190 - SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections https://effieparks.com/podcast/episode-189-developing-personalized-therapeutics-for-ultra-rare-patients-with-la-jolla-labs-ceo-jeff-milton monthly 0.5 2023-06-08 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d98835dc-d067-4fa4-bbec-8957a5d65f11/IMG_20230526_103237.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 189 - Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton https://effieparks.com/podcast/episode-188-mast-genes-research-foundation-with-dr-kim-aldinger monthly 0.5 2023-06-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1685015335243-CXMMYMYTUAZ09NNYG3N1/6065895879354290232.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 188 - Rare Mom, Scientist and Co-Founder of the MAST Genes Research Foundation with Dr. Kim Aldinger https://effieparks.com/podcast/effisode-071-are-we-the-actors monthly 0.5 2023-05-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 071 - Are We The Actors https://effieparks.com/podcast/episode-187-keep-digging monthly 0.5 2023-05-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 187 - Keep Digging https://effieparks.com/podcast/episode-186-the-trexo-robot monthly 0.5 2023-05-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/73ae30c0-276b-4c4b-b6db-b74d076d0579/-3119516199620308709.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 186 - The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu https://effieparks.com/podcast/episode-185-the-outlet-chris-anselmo monthly 0.5 2023-05-11 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/8df6ff32-c2da-4ce3-9d94-0cc6d8b7f04e/343294367_622141919833830_3648846092519962574_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 185 - The Outlet - How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy https://effieparks.com/podcast/episode-184-more-of-everything monthly 0.5 2023-05-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/54ae6499-090d-40ad-a7d0-0e1e3357732b/8087930034773612045.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 184 - More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade https://effieparks.com/podcast/episode-183-wishing-well monthly 0.5 2023-04-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 183 - Wishing Well https://effieparks.com/podcast/effisode-070-the-ultimate-rare-disease-resource-guide monthly 0.5 2023-04-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 070 - The Ultimate Rare Disease Resource Guide https://effieparks.com/podcast/episode-182-dr-justin-west monthly 0.5 2023-04-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1681507854076-QDV951M5LZJ125LD02O8/received_2514162238746547.jpeg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 182 - Doctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Child's KCNT1 Epilepsy with Dadvocate Dr. Justin West https://effieparks.com/podcast/episode-181-probably-genetic-ceo-lukas-lange monthly 0.5 2023-04-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/62789bf2-c09c-4c36-a237-fda489d29e24/338808923_217010237586967_4900176865546362111_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 181 - Helping Undiagnosed Patients Who Experience Symptoms of Rare Diseases Find Answers with Free Genetic Testing in a Matter of Weeks with Probably Genetic CEO Lukas Lange https://effieparks.com/podcast/effisode-069-theres-no-crying-in-baseball monthly 0.5 2023-04-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 069 - There's No Crying In Baseball https://effieparks.com/podcast/episode-180-rare-patient-voice-founder-wes-michael monthly 0.5 2023-04-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a860eeb8-253e-4440-bef1-62892a8811de/338426704_729126652032315_5595320249884325817_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 180 - Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael https://effieparks.com/podcast/episode-179-take-part-founders-and-pyroxd-1-parents-matt-and-maria-granados monthly 0.5 2023-03-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1679580701192-WQ9JFL81HY65WYZ0QBUO/OUAG_IG-mattMariaGranados.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 179 - Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados https://effieparks.com/podcast/effisode-068-wheelchairs-and-walls monthly 0.5 2023-03-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 068 - Wheelchairs and Walls https://effieparks.com/podcast/episode-178-exhausted-and-energized monthly 0.5 2023-03-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 178 - Exhausted and Energized https://effieparks.com/podcast/episode-177-real-rare-mama-shop-talk monthly 0.5 2023-03-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d976a7df-06af-491b-9ffb-2711575cd1b3/334901768_741531577531552_4739382957263413198_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 177 - Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz https://effieparks.com/podcast/episode-176-love-hope-and-cure-syngap monthly 0.5 2023-02-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4ae823ca-47f8-4aab-9e59-41e318b7d734/Hope+Love.+Cure+SYNGAP.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 176 - Love, Hope and Cure SYNGAP https://effieparks.com/podcast/episode-175-every-patient-matters monthly 0.5 2023-02-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/cb8a77b9-36c5-4c5d-a36a-38b88dc1fe83/n-Lorem+promo+graphic.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 175 - Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke https://effieparks.com/podcast/effisode-067-rare-disease-day-events monthly 0.5 2023-02-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 067 - Rare Disease Day Events https://effieparks.com/podcast/episode-174-to-the-moon-and-back monthly 0.5 2023-02-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 174 - To the Moon and Back https://effieparks.com/podcast/episode-173-honoring-a-husbands-legacy-by-finishing-his-work-on-a-documentary-about-rare-disease-acute-flaccid-myelitis-and-her-own-grief-along-the-way-with-sarah-potter monthly 0.5 2023-02-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/3171058f-843a-42de-a6be-36c701c2e7ba/329837756_741369687280737_4097813829590940012_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 173 - Honoring a Husband’s Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter https://effieparks.com/podcast/effisode-066-barbara-is-real monthly 0.5 2023-02-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 066 - Barbara is Real https://effieparks.com/podcast/episode-172-digging-into-the-data-to-better-understand-scn8a-with-madeleine-oudin-phd monthly 0.5 2023-02-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/52749aa8-d433-4ecd-901f-67f7dcbd3622/327394711_588902812570710_6636888411592079693_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 172 - From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts https://effieparks.com/podcast/episode-171-starting-a-clinical-trial-for-aspartylglucosaminuria-with-rare-mom-julia-taravella monthly 0.5 2023-02-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/0467c753-f3da-48c7-bfba-c879f78720ee/327336945_704433208071313_5316150238805950740_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 171 - Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella https://effieparks.com/podcast/effisode-065-seizures-are-stupid monthly 0.5 2023-01-24 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 065 - Seizures Are Stupid https://effieparks.com/podcast/episode-170-new-beginnings monthly 0.5 2023-01-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 170 - New Beginnings https://effieparks.com/podcast/episode-169-happiness-is-meant-to-be-shared monthly 0.5 2023-01-26 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1673534641015-YT0SLWT8HRZOSTEOS3DP/IMG_20230111_175608.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 169 - Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO dadvocate Andrés Treviño https://effieparks.com/podcast/effisode-064-the-friendship-circle monthly 0.5 2023-01-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 064 - The Friendship Circle https://effieparks.com/podcast/episode-168-being-brave-curious-and-motivated-to-help-make-a-difference-with-dlg4-research-mama-payal-patel monthly 0.5 2023-01-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1672886874725-X4FKHHPCEZ49WUH1GK92/323682567_1128741861173406_3199948330294864111_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 168 - Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel https://effieparks.com/podcast/episode-167-care-team-prescription monthly 0.5 2023-01-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/92c26082-f6aa-4b26-bead-c0b47d8ae9cf/6116580236581499742.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 167 - Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer https://effieparks.com/podcast/effisode-063-rare-disease-day-2023 monthly 0.5 2022-12-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 063 - Rare Disease Day 2023 https://effieparks.com/podcast/episode-166-a-focus-on-patient-advocacy monthly 0.5 2022-12-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/54d1b46a-e57e-4394-a7d3-ed298e600cbb/321307591_839692980645297_8921464423175188833_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 166 - A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD https://effieparks.com/podcast/episode-165-holiday-cheer monthly 0.5 2023-01-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 165 - A Rare Collection - Holiday Cheer https://effieparks.com/podcast/effisode-062-presents-portraits-and-beyond-the-diagnosis monthly 0.5 2022-12-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 062 - Presents, Portraits and Beyond the Diagnosis https://effieparks.com/podcast/episode-164-clinical-pharmacist-rachel-heilmann monthly 0.5 2022-12-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/184b1f0e-c8b7-4165-b1ac-e7381ab5b2ce/3877814681906790912.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 164 - The Clinical Pharmacist - Why They Are A VIP For Our Care Team and How We Can Get to Know Them - With NARS1 Rare Disease Mom - Rachel Heilmann https://effieparks.com/podcast/episode-163-nicole-johnson monthly 0.5 2023-01-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/7597749c-24d7-4724-8a54-8dd436d7f720/IMG_20221130_192804.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 163 - How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson https://effieparks.com/podcast/effisode-061-fireandice monthly 0.5 2022-11-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 061 - Fire and Ice https://effieparks.com/podcast/episode-162-rare-disease-dad-gianluca-pirozzi monthly 0.5 2022-12-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a31290b7-dc13-418c-88bd-5ad0e3378abd/IMG_20221123_185620.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 162 - Your Career and Personal Life Collide - Smith Magenis Rare Disease Dad Gianluca Pirozzi https://effieparks.com/podcast/episode-161-beep-beep-beep monthly 0.5 2022-11-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 161 - A Rare Collection - Beep, Beep, Beep https://effieparks.com/podcast/effisode-060-the-list monthly 0.5 2022-11-15 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 060 - The List https://effieparks.com/podcast/episode-160-a-moms-advocacy-for-her-son-who-has-hemophilia-b monthly 0.5 2022-11-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/232e9f92-3e2f-4362-af1d-ac4615d9a6a9/314908191_453744203347875_2823481265465962525_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 160 - A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson https://effieparks.com/podcast/episode-159-social-security-disability-revealed-why-its-so-hard-to-access-benefits-and-what-you-can-do-about-it-with-spencer-bishins monthly 0.5 2022-11-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/bfab786e-4490-42cf-ad9c-db8dcbae139f/313894319_1244324499741042_8205021115696832378_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 159 - Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins https://effieparks.com/podcast/effisode-059-chasing-greenlights monthly 0.5 2022-11-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 059 - Chasing Greenlights https://effieparks.com/podcast/episode-158-medical-student-urvi-gupta-joins-the-global-genes-rare-compassion-program-with-alexions-patient-advocacy-champion-wendy-erler monthly 0.5 2022-11-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4cd593c1-6a8d-4841-b2eb-38b832b58b82/313107180_795333861737050_1530985359895035349_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 158 - Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler https://effieparks.com/podcast/episode-157-the-effects-of-rare-disease-on-relationships monthly 0.5 2022-10-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/bab971f9-9b46-4379-893f-0439ad653016/311985304_471399281449104_7089727371760063692_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 157 - The Effects of Rare Disease on Relationships and How to Cope When You and Your Partner Have Different Strategies with KCNH1 Founder and Rare Mama Michaelle Jinnette https://effieparks.com/podcast/effisode-058-gravity monthly 0.5 2022-10-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 058 - Gravity https://effieparks.com/podcast/episode-156-batten-down-the-hatches monthly 0.5 2022-10-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 156 - A Rare Collection - Batten Down the Hatches https://effieparks.com/podcast/episode-155-creld1-dadvocate-adam-clatworthy monthly 0.5 2022-10-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/10c7dc3b-62d2-4146-a8fd-9a5309b88e2a/OUAG_IG-a+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 155 - CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy https://effieparks.com/podcast/effisode-057-gilmore-girls-pumpkin-spice-and-baja monthly 0.5 2022-10-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 057 - Gilmore Girls, Pumpkin Spice and Baja https://effieparks.com/podcast/episode-154-terry-pirovolakis-groundbreaking-gene-therapy monthly 0.5 2022-10-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/8dc69c15-f989-47b2-bd3a-87c60e44aa0c/308310655_5705040672872506_3937111066078579351_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 154 - A Groundbreaking Gene Therapy In Record Time to Cure His Son with SPG50 Sets a New Course For Future Rare Disease Treatments with Terry Pirovalakis https://effieparks.com/podcast/episode-153-improving-inclusion-practices-in-schools-with-the-inclusive-educator-bre-gastaldi monthly 0.5 2022-09-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/0f5279e2-7350-4f44-b90b-ec358ad5bab4/5590944536139453392.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 153 - Improving Inclusion Practices in Schools with the Inclusive Educator - Bre Gastaldi https://effieparks.com/podcast/effisode-056-shake-it-off monthly 0.5 2022-09-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 056 - Shake It Off https://effieparks.com/podcast/episode-152-underestimated monthly 0.5 2022-09-15 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 152 - A Rare Collection - Underestimated https://effieparks.com/podcast/episode-151-rare-friends-forever monthly 0.5 2022-09-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/416a3539-ca50-4661-a5a5-440a3dfd4048/305081980_5317850101665222_8560926638359031665_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 151 - Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson https://effieparks.com/podcast/effisode-055-inclusion-revolution monthly 0.5 2022-09-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 055 - Inclusion Revolution https://effieparks.com/podcast/episode-149-geri-and-zach-landman monthly 0.5 2022-09-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d929d325-603d-43e3-bd48-24f5fb4d90c9/300347673_413609224170250_856988001733000936_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 149 - Together We Can Cure Single-Gene Disorders Starting with PGAP3 - Moonshot - An Ambitious and Innovative Project with Geri and Zach Landman https://effieparks.com/podcast/effisode-054-montana-or-bust monthly 0.5 2022-08-24 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 054 - Montana or Bust https://effieparks.com/podcast/episode-148-cara-freedman-rare-disease-sibling monthly 0.5 2022-08-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/41a1021d-d089-44ad-9b09-183b2a210ae1/299507269_771473360841178_88331204220946385_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 148 - Rare Disease Siblings, The Glass Children - Bulletproof and Shattered - With SMA Sibling Cara Freedman https://effieparks.com/podcast/episode-147-easier-said-than-done monthly 0.5 2022-08-11 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 147 - A Rare Collection - Easier Said Than Done https://effieparks.com/podcast/effisode-053-the-lunchboxes monthly 0.5 2022-08-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 053 - The Lunchboxes https://effieparks.com/podcast/episode-146-when-your-career-and-personal-life-collide monthly 0.5 2022-08-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/cb7e0268-8646-4f61-8d36-ba90e8c19047/296050829_1028571891151665_1623941489381939998_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 146 - When Your Career and Personal Life Collide - VP of Medical and Science Strategy and Head of Syneos Health's Rare Disease Consortium FSHD Rare Dad - Raymond Huml https://effieparks.com/podcast/episode-145-bridging-the-gap-with-industry-with-shazia-ahmad monthly 0.5 2022-08-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f07cffbf-8f04-4f8e-8e26-ef124453cb26/-8784081930509192483.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 145 - Ensuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad https://effieparks.com/podcast/effisode-052-ctnnb1-awareness-day-rare-disease-family-meet-up monthly 0.5 2022-07-26 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 052 - CTNNB1 Awareness Day - Rare Disease Family Meet-Up https://effieparks.com/podcast/episode-144-gay-grossman-get-on-top-of-the-iep-wave monthly 0.5 2022-07-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c45cbdd3-83c7-46b0-963a-9f2107376f0c/4786583673592057027.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 144 - Summer Surfing - Get On Top of the IEP Wave https://effieparks.com/podcast/episode-143-a-rare-collection-i-will-never-forget monthly 0.5 2022-08-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4589d711-49ae-4685-b7bb-1f12d840cb90/Storytelling+Art+1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 143 - A Rare Collection - I Will Never Forget https://effieparks.com/podcast/effisode-051-back-on-track-all-aboard-the-inclusion-train monthly 0.5 2022-07-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 051 - Back on Track - All Aboard the Inclusion Train https://effieparks.com/podcast/episode-142-yosr-hamza monthly 0.5 2022-07-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/760991a3-ba66-4747-9db6-2b1f54a17cb9/290886554_558158035967088_1093337488678421181_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 142 - Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza https://effieparks.com/podcast/episode-141-a-rare-mama-bear monthly 0.5 2022-07-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/fc0b1c85-9492-47ba-80ae-43a1988728db/289677793_740848887040282_5537320553568159948_n.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 141 - A Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa https://effieparks.com/podcast/effisode-050-global-genes-rare-disease-patient-advocacy-summit monthly 0.5 2022-06-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 050 - Global Genes RARE Disease Patient Advocacy Summit https://effieparks.com/podcast/episode-140-picking-the-brain-of-a-rare-disease-dad-with-ctnnb1-dadvocate-casey-parks monthly 0.5 2022-06-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d214482d-2eef-4858-9414-329be1c6fc81/288553282_3380568278837832_1407053833104927648_n.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 140 - Picking the Brain of a Rare Disease Dad - with CTNNB1 Dadvocate - Casey Parks https://effieparks.com/podcast/139-remember-who-you-are monthly 0.5 2022-06-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 139 - Remember Who You Are https://effieparks.com/podcast/effisode-049-find-your-fairy-godmother monthly 0.5 2022-06-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 049 - Find Your Fairy Godmother https://effieparks.com/podcast/episode-138-chelseas-hope-lafora-children-research-fund-with-niki-markou-and-jenifer-merriam monthly 0.5 2022-06-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a5dabb17-61e4-47db-8e38-16357fe020a1/-7530110706473731243.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 138 - Chelsea's Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam https://effieparks.com/podcast/episode-137-advancing-therapies-for-rare-liver-diseases-and-alagille-syndrome monthly 0.5 2022-06-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/44b194f7-e8f3-4a7d-8931-1d91c2986336/-4368913511366899871.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 137 - Advancing Therapies for Rare Liver Diseases and Alagille Syndrome https://effieparks.com/podcast/effisode-048-guilt-aint-nobody-got-time-for-that monthly 0.5 2022-05-31 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 048 - Guilt - Ain't Nobody Got Time for That https://effieparks.com/podcast/episode-136-the-value-of-intensive-therapy-for-kids-with-disabilities-with-jessie-cline-and-erin-garrison-of-climb-intensive-pediatric-therapy monthly 0.5 2022-06-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/def17072-eebe-4152-99d4-d3084cf86b9f/-8783684019767937045.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 136 - The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy https://effieparks.com/podcast/135-up-at-night monthly 0.5 2022-05-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 135 - A Rare Collection - Up At Night https://effieparks.com/podcast/effisode-047-rare-entrepreneur-bootcamp-warriors monthly 0.5 2022-05-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 047 - RARE Entrepreneur Bootcamp Warriors https://effieparks.com/podcast/episode-134-rare-mom-alison-breitbarth-and-infantile-pompe-disease monthly 0.5 2022-05-26 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/5bd0d86b-750e-40b9-b0fd-8f73a8be935a/5733394526376153550.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 134 - The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease https://effieparks.com/podcast/episode-133-the-unique-expertise-of-a-genetic-counselor monthly 0.5 2022-05-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/39d20dba-2868-4d87-a73c-271c77cceae5/-4368978333302998052.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 133 - The Unique Expertise of a Genetic Counselor https://effieparks.com/podcast/effisode-046-i-dont-like-that monthly 0.5 2022-05-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 046 - I Don't Like That https://effieparks.com/podcast/episode-132-rare-disease-caregiving-post-childhood-with-rare-mom-and-primary-ciliary-dyskinesia-advocate-karen-mcewen monthly 0.5 2022-05-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/6bad5304-9be7-419c-8da0-7087363a28fc/-7346171840935096736.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 132 - Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen https://effieparks.com/podcast/episode-131-kelley-coleman monthly 0.5 2022-04-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d8c93ed6-66c2-44e5-a8ab-bd2b105739e6/1730432922614527895.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 131 - Kelley Coleman - Author of You Will Feel Better - A Guidebook for Rare Disease Parents https://effieparks.com/podcast/effisode-045-gimme-a-break-spring-break monthly 0.5 2022-04-19 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 045 - Gimme a Break, Spring Break https://effieparks.com/podcast/130-penny-for-your-thoughts monthly 0.5 2022-04-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 130 - A Rare Collection - A Penny For Your Thoughts https://effieparks.com/podcast/episode-129-self-care-for-your-healthcare monthly 0.5 2022-04-21 https://effieparks.com/podcast/effisode-044-a-perfect-day-for-a-walk monthly 0.5 2022-04-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 044 - A Perfect Day for a Walk https://effieparks.com/podcast/episode-128-heidi-edwards monthly 0.5 2022-04-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/5d660c86-07e1-4d05-8a00-7002a4128f3d/2910863020155892159.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 128 - Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing https://effieparks.com/podcast/episode-127-cdkl5-mom-marissa-bishop monthly 0.5 2022-04-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/8a987c3f-dfad-49e9-a138-65c322b579d6/IMG_20220323_162656.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 127 - Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop https://effieparks.com/podcast/effisode-043-grocery-store-answers monthly 0.5 2022-03-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 043 - Grocery Store Answers https://effieparks.com/podcast/episode-126-unexpected-findings monthly 0.5 2022-03-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 126 - A Rare Collection - Unexpected Findings https://effieparks.com/podcast/episode-125-katie-lloyd monthly 0.5 2022-03-24 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a54f2038-1361-4ece-b1c7-942240032b62/2975207216183394825.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 125 - A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure Katie Lloyd https://effieparks.com/podcast/effisode-042-moments monthly 0.5 2022-03-08 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 042 - Moments https://effieparks.com/podcast/episode-124-jamas-lafreniere monthly 0.5 2022-03-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/889c80c6-f8e1-413a-a813-dc314121ad88/3625266063172818241.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 124 - Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere https://effieparks.com/podcast/episode-123-liz-morris monthly 0.5 2022-03-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/fe7ca93a-a29a-4c42-ae87-aac3d644d0de/-3225853947959325507.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 123 - Figuring Out How to Infuse Meaning in the Days After the Loss of a Child https://effieparks.com/podcast/effisode-041-random-acts-of-kindness-in-the-rare-community monthly 0.5 2022-02-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 041 - Random Acts of Kindness in the Rare Community https://effieparks.com/podcast/episode-122-this-is-us monthly 0.5 2022-02-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 122 - A Rare Collection - This is Us https://effieparks.com/podcast/episode-121-sehreen-noor-ali monthly 0.5 2022-02-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/dcabfea4-61bc-4ffe-ab59-5eeef35d9461/4960118097813693056.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 121 - Caregiver Mental Health and Physical Wellbeing with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali https://effieparks.com/podcast/effisode-040-bathroom-floor-moments monthly 0.5 2022-02-08 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 040 - Bathroom Floor Moments https://effieparks.com/podcast/episode-120-kathryn-alexander-part-two monthly 0.5 2022-02-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/cbb0323b-ff18-435a-8225-392c76365535/-3347462628922571310.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 120 - What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander https://effieparks.com/podcast/episode-119-kathryn-alexander monthly 0.5 2022-02-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/cbb0323b-ff18-435a-8225-392c76365535/-3347462628922571310.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 119 - One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander https://effieparks.com/podcast/effisode-039-oh-goody-anxiety-is-visiting monthly 0.5 2022-01-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 039 - Oh Goody - Anxiety is Visiting https://effieparks.com/podcast/episode-118-parvathy-raman-krishnan monthly 0.5 2022-01-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/50d5b917-56e1-4a13-81ff-af52021bf839/1467231681096505601.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 118 - Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan https://effieparks.com/podcast/episode-117-new-beginnings monthly 0.5 2022-01-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 117 - A Rare Collection - New Beginnings https://effieparks.com/podcast/effisode-038-rare-disease-day monthly 0.5 2022-01-11 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 038 - Rare Disease Day https://effieparks.com/podcast/episode-116-luke-rosen monthly 0.5 2022-01-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/fd936bef-d6c6-4ee5-adef-633159b9f939/8012146569617310083.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 116 - A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen https://effieparks.com/podcast/episode-115-leah-moore monthly 0.5 2022-01-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/fd709b4d-dc57-4f77-b41d-28cbaa6f16cf/4972836097618295736+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 115 - Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore https://effieparks.com/podcast/effisode-037-the-kindness-of-strangers monthly 0.5 2021-12-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 037 - The Kindness of Strangers https://effieparks.com/podcast/episode-114-noah-siedman monthly 0.5 2021-12-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/b0d64819-5d78-41c6-8caa-8da6103e5e16/-2611127243560015122.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 114 - The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman https://effieparks.com/podcast/episode-113-lullabies monthly 0.5 2021-12-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 113 - A Rare Collection - Lullabies https://effieparks.com/podcast/effisode-036-the-magic-of-friendship-at-the-north-pole monthly 0.5 2021-12-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 036 - The Magic of Friendship at the North Pole https://effieparks.com/podcast/episode-112-jessica-patay monthly 0.5 2021-12-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f8ed6050-a6f0-40a9-9ab3-2449ad352e0b/-6999909839201960282.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 112 - Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay https://effieparks.com/podcast/episode-111-elisa-seeger-ald-alliance monthly 0.5 2021-12-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/9c14d0f2-b292-4cde-a758-655b07165b09/-4848602185043150362.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 111 - The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger https://effieparks.com/podcast/effisode-035-grief-and-joy-are-mingling-this-holiday-season monthly 0.5 2021-11-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 035 - Grief and Joy are Mingling this Holiday Season https://effieparks.com/podcast/episode-110-turkey-soup-for-the-soul monthly 0.5 2021-11-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/0f371a44-a02e-4b0d-ab6d-c7fe0926f3da/-3838056826489052605.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 110 - Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives https://effieparks.com/podcast/episode-109-what-i-know-for-sure monthly 0.5 2021-11-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 109 - A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins https://effieparks.com/podcast/effisode-034-find-the-connection monthly 0.5 2021-11-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 034 - Find the Connection https://effieparks.com/podcast/episode-108-hannah-lowe-lcmd-research-foundation monthly 0.5 2021-11-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/67ef49cf-42be-4b87-a225-b3ba6e54bcff/6459216799363384223.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 108 - Finding Hope: From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe https://effieparks.com/podcast/episode-107-merrf-syndrome-mom-jessica-fein monthly 0.5 2021-11-11 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/397a0910-e1b3-4981-9925-a9b3b64e6edd/-662610552933809467.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 107 - The Joy Doesn't Need to be Ambiguous Even Though The Grief Is - Rare MERRF Syndrome Mom Jessica Fein https://effieparks.com/podcast/effisode-033-cinderella-cinderella monthly 0.5 2021-11-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 033 - Cinderella, Cinderella https://effieparks.com/podcast/episode-106-rare-book-club monthly 0.5 2021-11-04 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/8d83e246-5193-4930-bacb-976314778539/-8739525676725500177+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 106 - Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl https://effieparks.com/podcast/episode-105-project-sebastian-founder-christopher-velona monthly 0.5 2021-10-28 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/26719b66-7381-4fd4-a729-ead0b7a0bb98/-688054329033036952.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 105 - Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona https://effieparks.com/podcast/effisode-032-two-disabled-dudes monthly 0.5 2021-10-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 032 - Two Disabled Dudes https://effieparks.com/podcast/episode-104-rare-collection-courage monthly 0.5 2021-10-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 104 - A Rare Collection- Stories of Courage with Felix Townsin, Erica Jolene Stearns, Mahrynn McLaughlin and Brianna Colquitt https://effieparks.com/podcast/episode-103-rose-reif monthly 0.5 2021-10-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1633572601960-KG34FJCQE1LSA29SQCKD/reif.png Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 103 - How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue and Decision Fatigue with Counselor Rose Reif https://effieparks.com/podcast/effisode-031-the-kids-do-napa-center-in-los-angeles monthly 0.5 2021-10-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 031 - The Kids Do NAPA Center in Los Angeles https://effieparks.com/podcast/episode-102-marni-cartelli monthly 0.5 2021-10-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1632968474091-OXCLNPWPXBWP0OHVDK90/1617405169296549639.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 102 - Strength: How We View It, Define It and How It Changes As We Move Through Life With Rare Disease and Chronic Illness - Marni Cartelli https://effieparks.com/podcast/episode-101-melanie-dimmitt-m9dga monthly 0.5 2021-09-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1632399202997-G0HNM65YPGVG62J9MATE/IMG_20210922_201209.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 101 - Finding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special https://effieparks.com/podcast/effisode-030-road-trip-to-napa-center monthly 0.5 2021-09-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 030 - Road Trip to NAPA Center https://effieparks.com/podcast/episode-100-rare-collection-because-of-you monthly 0.5 2021-09-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 100 - A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point https://effieparks.com/podcast/episode-099-strength-and-inspiration-found-through-rare-disease-for-advocacy-and-a-patient-first-movement-with-ceo-of-optime-care-donovan-quill monthly 0.5 2021-09-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1632399706852-QFHEMEAXDTB7THAFN7KY/7241798194732783337+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 099 - Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill https://effieparks.com/podcast/effisode-029-ford-goes-to-kindergarten monthly 0.5 2021-09-07 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 029 - Ford Goes to Kindergarten https://effieparks.com/podcast/episode-098-perlara-founder-and-ceo-ethan-perlstein monthly 0.5 2021-09-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1630553014598-4B2112QFF5GC9CRGS8DV/-3948328263948004773.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 098 - Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO https://effieparks.com/podcast/episode-097-jordans-guardian-angels-mom-carole-bakhos monthly 0.5 2021-09-02 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1629947558316-88R3VU9DLLBLFQ0IPAGM/3822146282104382170.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 097 - A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos https://effieparks.com/podcast/effisode-028-from-the-sidelines monthly 0.5 2021-08-24 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 028 - From the Sidelines https://effieparks.com/podcast/episode-096-finding-peace-and-new-energy monthly 0.5 2021-08-26 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1629343113847-VL6CPZJKD6J4NAIBZ0XF/-987389367161308973.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 096 - Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short https://effieparks.com/podcast/episode-095-rare-collection-skin-in-the-game monthly 0.5 2021-08-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 095 - A Rare Collection- Skin in the Game with Adam Johnson, Nathan Peck and Marni Cartelli https://effieparks.com/podcast/effisode-027-rare-and-relatable monthly 0.5 2021-08-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 027 - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow https://effieparks.com/podcast/episode-094-mike-and-nasha monthly 0.5 2023-01-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1628135319498-5V1ON5YOXK20O8HVAAJZ/2400951859432959427.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 094 - The 12 Commandments to guide you when you're starting a rare disease patient advocacy group. With Nasha Fitter and Mike Graglia https://effieparks.com/podcast/episode-093-spela-mirosevic monthly 0.5 2021-08-05 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1627569251080-3JJ364QKKC5TVJAH4OH4/5866375480977918131.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 093 - Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič https://effieparks.com/podcast/effisode-026-my-kids-your-kids monthly 0.5 2021-07-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 026 - My Kids, Your Kids - They're All Perfect https://effieparks.com/podcast/episode-092-sanath-kumar-ramesh-opentreatments monthly 0.5 2021-07-31 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1626928097939-2UF33V3T7N3X0YTG3LPV/-9040454805054168605.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 092 - Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments https://effieparks.com/podcast/episode-087-rare-collection-superheroes-w6z79 monthly 0.5 2021-07-15 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 091 - A Rare Collection - Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff https://effieparks.com/podcast/effisode-025-family-camp-annoying-brothers-and-the-doom-of-packing monthly 0.5 2021-07-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 025 - Family Camp, Annoying Brothers, and the Doom of Packing https://effieparks.com/podcast/episode-090-rare-disease-dad-and-psychologist-al-freedman monthly 0.5 2021-07-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625714723633-0Q6D3AFLV21TGU3A7F9U/-4953742989178017567.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 090 - Mental Health and chronic stress with Rare Disease Dad and Psychologist Al Freedman, Ph.D https://effieparks.com/podcast/episode-089-discovering-new-treatments-for-rare-genetic-diseases-with-modelis-ceo-and-co-founder-james-doyle monthly 0.5 2021-07-08 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625155944494-EEQL18OIXLDSKUJ0Q3FY/IMG_20210630_202954.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 089 - Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle https://effieparks.com/podcast/effisode-024-heatwaves-and-a-happy-birthday monthly 0.5 2021-06-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 024 - Heatwaves and a Happy Birthday https://effieparks.com/podcast/episode-088-living-with-persistent-uncertainty-without-a-rare-disease-diagnosis-meghan-halley monthly 0.5 2021-07-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1624505328835-9AX3BGDOJJLJKMRAZW4H/-2553309159836356253.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 088 - Living with Persistent Uncertainty Without a Rare Disease Diagnosis - Meghan Halley https://effieparks.com/podcast/episode-087-rare-collection-superheroes monthly 0.5 2021-07-15 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623904470730-HZAAX9FZZL5QM9SPX6Y7/-3280483701796212562.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 087 - A Rare Collection - Superheroes https://effieparks.com/podcast/effisode-023-making-cents-of-it-all monthly 0.5 2021-06-15 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 023 - Making Cents of it All https://effieparks.com/podcast/episode-086-diagnosis-matters-with-hnrnph2-rare-mom-angela-lindig monthly 0.5 2021-06-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1623298997846-WF9CHHALB69QCIAKC2D3/-1208435499562898493.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 086 - Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig https://effieparks.com/podcast/episode-085-charles-steward monthly 0.5 2021-06-10 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1622696552724-NWE28WTXLEZZB1A64CDP/6214419050511347569.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 085 - Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward https://effieparks.com/podcast/effisode-022-putting-the-play-in-playground monthly 0.5 2021-06-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 022 - Putting the Play in Playground with DadVocate - Casey Parks https://effieparks.com/podcast/episode-084-angel-aid-cares monthly 0.5 2021-06-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1622089624038-Q2MFDC8JNBJ10HXB82S3/-6784723165137760644.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 084 - Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O’Loughlin https://effieparks.com/podcast/episode-083-advocates-come-in-small-packages monthly 0.5 2021-05-27 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1621484878944-5VM5BS8B06OEOV7LJQTS/2596480541727841611.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 083 - Advocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell https://effieparks.com/podcast/effisode-021-unexpected-moments-in-the-stairwell monthly 0.5 2021-05-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 021 - Unexpected Moments in the Stairwell https://effieparks.com/podcast/episode-082-rare-disease-the-ultimate-special-teams-with-uplifting-athletes-with-rob-long monthly 0.5 2021-05-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1620885661830-Y1STPHQOVX2FP7MU1VE5/6768891905470261376.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 082 - Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long https://effieparks.com/podcast/episode-081-rare-disease-adoption monthly 0.5 2021-05-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1620001741882-1DLWDSAJ3XUNUUIG1KP7/-3967145485676466050.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 081 - Rare Disease Adoption with Josh and Monica Poynter https://effieparks.com/podcast/effisode-020-empathy-puts-some-pep-in-your-step monthly 0.5 2021-05-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 020 - Empathy Puts Some Pep in Your Step https://effieparks.com/podcast/episode-080-megan-devine monthly 0.5 2021-05-03 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1619672958586-JS1M9AJBLFSF2PXE1DV7/-9159962641886304193.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 080 - Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine https://effieparks.com/podcast/episode-079-mental-health-for-men-living-with-rare-diseases monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1619065199224-TO99MH5FC7WXCETX7C56/5611105936164388448.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 079 - Creating Space for Mental Health for Men Living with Rare Diseases with David Ross https://effieparks.com/podcast/effisode-019-adventures-in-the-grocery-store monthly 0.5 2021-04-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 019 - Adventures in the Grocery Store https://effieparks.com/podcast/episode-078-media-with-a-mission-with-believe-limited-ceo-patrick-james-lynch monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1618458662565-ENAU8DQSIO3NDGYUHDKL/4317838099465322269.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 078 - Media with a Mission with Believe Limited CEO Patrick James Lynch https://effieparks.com/podcast/episode-077-momvocate-kara-karlson monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1617856039831-UGEBZNUJZ33YQY8S4OTJ/4524222655863073839.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 077 - Top Tips on Advocating For Your Child with Momvocate Kara Karlson https://effieparks.com/podcast/effisode-018-nacho-nacho-man monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 018 - Nacho, Nacho Man https://effieparks.com/podcast/episode-076-allstripes-caitlin-nichols monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1617252095148-RB5MND5AL4MMN57AOGXD/5905392525522279676.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 076 - AllStripes: Jump Start New Research for Your Rare Disease with Caitlin Nichols https://effieparks.com/podcast/episode-075-rare-mom-madeline-cheney monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1616682275477-JBKWVZWSG2PYB8K7HELC/1160366469354837253.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 075 - Rare Mom Madeline Cheney - The Rare Life Podcast https://effieparks.com/podcast/effisode-017-advocates-elevator-pitch monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 017 - An Advocate's Elevator Pitch https://effieparks.com/podcast/episode-074-lightning-and-love-foundation monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1616047311395-UMZ242JCVBRTNZMRXAAD/-5335859478259222743.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 074 - Rare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation https://effieparks.com/podcast/episode-073-david-solomon monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1615436038336-J3OKBPAWA3VLTKCNRYS6/-6134465481980161414.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 073 - David Solomon - CEO of Pharnext - A Biopharmaceutical Company https://effieparks.com/podcast/effisode-016-the-friendship-circle monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 016 - The Friendship Circle https://effieparks.com/podcast/episode-071-harsha-rajasimha monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1614223580701-4AAKHMSCGLMH88424Y59/Untitled+design+%283%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 071 - Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO or Jeeva Informatics https://effieparks.com/podcast/effisode-015-show-your-stripes monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 015 - Show Your Stripes https://effieparks.com/podcast/episode-070-cure-vcp-with-nathan-peck monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1613621328820-W91R37HRY03COPKVAY31/OUAG_IG-n1+%281%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 070 - Cure VCP With Rare Disease Trailblazer - Nathan Peck https://effieparks.com/podcast/episode-069-bens-friends monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1613023107887-2HK0ZY769QPPJKXJSIB0/-6555150234642319703.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 069 - Ben's Friends- A Rare Disease Social and Support Platform with Ben Munoz https://effieparks.com/podcast/effisode-013-growth-and-smash-cakes-3hpj2 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 014 - A Child's Imagination https://effieparks.com/podcast/episode-068-jason-colquitt monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1612419228433-Q635VHPQ0DJC0PI20DF8/1587591174786850029.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 068 - Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare https://effieparks.com/podcast/episode-067-hippotherapy-and-adaptive-riding monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1611811710557-XTGP50OWS0LKJ5VG3SSI/-3867219281799625141.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 067 - Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center https://effieparks.com/podcast/effisode-013-growth-and-smash-cakes monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 013 - Growth and Smash Cakes https://effieparks.com/podcast/episode-066-rare-mama-nikki-mcintosh monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1611206305155-HSESDIFSTICFAZ99VRKR/-3071637409614519431.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 066 - Rare Mama - Nikki McIntosh - Navigating Life with Rare https://effieparks.com/podcast/episode-065-beginners-guide-to-rare-disease-daniel-defabio monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1610602678470-1U2C5J1UQ8SLXNM9VMVF/-2425945112742169983.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - Episode 065 - Beginner’s Guide to Rare Disease- Anecdotes for Those Early Days of Diagnosis - Daniel DeFabio https://effieparks.com/podcast/effisode-012 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 012 https://effieparks.com/podcast/episode-064-seth-rotberg-our-odyssey-huntingtons-disease monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1609997185055-UQZR5MLBV54XCTBIH9UN/-2425945112742169983.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 064- Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis https://effieparks.com/podcast/episode-063-cheryl-lynn-townsin monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1609436062905-8P9S2L4UDGD0SI2EFHK0/IMG_20201231_082524.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 063 - The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin https://effieparks.com/podcast/effisode-011 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 011 https://effieparks.com/podcast/episode-062-cookies4cures monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1608786558343-KWQM49YQKJCNCYMDKKJT/cookies4cures.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 062 - Cookies4Cures with Dana Perella https://effieparks.com/podcast/episode-061-madison-mclaughlin monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1608189331010-C2OH8PVHT9LV46ZWWUFZ/-8609731714618044719.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 061 - The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin https://effieparks.com/podcast/effisode-010 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 010 https://effieparks.com/podcast/episode-060-sarah-putt-ot4lyfe monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607573621389-6PRCNJC152562OF64HUX/-619337968476883651.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 060 - Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt https://effieparks.com/podcast/episode-059-blyth-lord monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1606979127051-3HW9QAJZ7GQI1CVYBXEK/-7253719833468849734.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 059 - Palliative Care & Courageous Parents Network with Founder Blyth Lord https://effieparks.com/podcast/effisode-009 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 009 https://effieparks.com/podcast/episode-058-turkey-soup-for-the-soul monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1606362443354-LT7MIDCPVLE0JN42H5MZ/-3838056826489052605.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 058 - Turkey Soup for the Soul https://effieparks.com/podcast/episode-057-slc13a5-tess-research-foundation-kim-nye monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1605762042183-5AQBCFWDH8TAP03MWKLD/-4403304135154689977.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 057 - SLC13A5 - TESS Research Foundation with Kim Nye https://effieparks.com/podcast/effisode-008 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 008 https://effieparks.com/podcast/episode-056-patricia-weltin-beyond-the-diagnosis monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1605153502362-W2HMI57F958I4EX0O1A3/patriciaweltin Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 056 - Rare Leader Patricia Weltin, CEO, Beyond the Diagnosis https://effieparks.com/podcast/episode-055-one-womans-kindness-sparks-a-neighborhood-to-do-the-same monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1604583395951-FGWUHY1UKW9FGTE42HWP/Screenshot%2B2020-11-05%2Bat%2B8.35.53%2BAM.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 055 - One Woman’s Kindness Sparks a Neighborhood To Do the Same https://effieparks.com/podcast/effisode-007 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 007 https://effieparks.com/podcast/episode-054-rare-theresa-thomas-kristine-hoestermann monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1603943274919-R8DMZTRC32GM2OS88H9C/Rare.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 054 - RARE - A Brand with a Purpose - Theresa Thomas and Kristine Hoestermann https://effieparks.com/podcast/episode-053-living-with-chronic-pain monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1603379728708-RM8EJXB43GQEXJFBMOBA/6985228067071930429.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 053 - Living with Chronic Pain - International Pain Foundation President Barby Ingle https://effieparks.com/podcast/effisode-006 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 006 https://effieparks.com/podcast/episode-052-adam-johnson-mitochondrial-myopathy monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1602727001804-HMP78BCNR0L9RH50UAMV/Adam+Johnson Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 052 - Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story https://effieparks.com/podcast/episode-051-truncus-arteriosus monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1602249280609-09ZSP9DP11XUNE4LQNL3/-2644409844555592471.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 051 - Truncus Arteriosus - A Rare Form of Congenital Heart Disease with Sonja Voice https://effieparks.com/podcast/effisode-005-merch-napa-center-beach-adventures monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 005 https://effieparks.com/podcast/episode-50-reflecting-with-casey monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1601521055288-M48KBLMK1AHF5GK1A5DT/50th+Episode Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 050 - Reflecting on 50 Episodes with Effie and Casey https://effieparks.com/podcast/episode-49-thanatophoric-skeletal-dysplasia-with-ashequka-lacey monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1600918653006-K6J1QLCFGLXTIQ0YZOSR/Ashequka+Lacey Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 049 - Thanatophoric Skeletal Dysplasia with Ashequka Lacey https://effieparks.com/podcast/effisode-004-fake-it-til-you-make-it monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 004 https://effieparks.com/podcast/episode-48-chronically-surviving monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1600314355034-W404ODNNZFMJYBGINSOM/Chronically+Surviving Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 048 - What is Chronically Surviving with Marcelle Longlade https://effieparks.com/podcast/episode-47-ciitizen-nasha-fitter monthly 0.5 2023-01-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1599713134975-04N3GN17K9YBWBEMMV97/nasha+fitter Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 047 - Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter https://effieparks.com/podcast/effisode-003 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 003 https://effieparks.com/podcast/episode-46-adrenoleukodystrophy-with-diane-kane monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1599102763599-UTLY5RD2VXHYNI6FQHFD/-3010465327760374423.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 046 - A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane https://effieparks.com/podcast/episode-45-two-disabled-dudes monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1598498517970-ALFHDCHBEYO483KCVYCE/6265973884884905689.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 045 - Two Disabled Dudes - Kyle Bryant and Sean Baumstark https://effieparks.com/podcast/episode-bonus-rare-together-watch-together monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1598413247680-E2HC1XYIIJUVJ7K6C6TE/5533287504020146293.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - BONUS EPISODE - Rare Together Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes https://effieparks.com/podcast/effisode-002 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 002 https://effieparks.com/podcast/episode-44-amber-freed monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597900773515-9TJZ9O1SX9NVXHQP3Q43/Add+a+subheading+%281%29.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 044 - A Mother’s Crusade to Find a Cure for Her Son - Amber Freed https://effieparks.com/podcast/episode-43-david-fajgenbaum monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597290821035-5S3FB0KFC5N0NG53QCRM/-4553420936133379948.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 043 - David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action https://effieparks.com/podcast/effisode-001 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1597158853500-ZAC6I9UCYT9NN0WOQOA5/-928706168472238810.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EFFISODE 001 https://effieparks.com/podcast/episode-42-wsu-roar-lisa-henniger monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1596684645215-FY4LNI2XVHRKX1GYFEA9/3573258399752785553.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 042 - WSU ROAR - Responsibility, Opportunities, Advocacy and Respect with Lisa Henniger https://effieparks.com/podcast/episode-41-syngap-research-fund monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1596085051647-IZFOJVKITNT15S53LBXZ/4712949437957624078.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 041 - Time is Brain: SYNGAP Research Fund with Mike Graglia https://effieparks.com/podcast/episode-40-tyra-skibington monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1595480957975-174C0ENBTZ8XW5OPMZTP/-177448970731325037.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 040 - Physical and Emotional Well-Being for the Caregiver with Tyra Skibington https://effieparks.com/podcast/episode-39-whitney-lavender monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1594871271472-1F5P9035SU9QIF1FJ4HE/-7319113725604009076.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 039 - Next Steps: A Journey Through CRPS to an Above-the-Knee Amputee with Whitney Lavender https://effieparks.com/podcast/episode-38-rare-like-us-with-taylor-kane monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1594269447847-7JZE50SSBENEVYG4B8ON/4664367886115696018.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 038 - Rare Like Us with Taylor Kane https://effieparks.com/podcast/episode-37-founder-of-lakikid monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1593665740169-R1RSSMU4KJYNO6M1HDQ2/2427281017625389359.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 037 - Founder of LakiKid: Sensory Tools for Home and Classroom with Jason Hsieh https://effieparks.com/podcast/episode-36-anna-laurent-alagille-syndrome monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1593056918792-9Z00PWCS6YRDT9VU1YK1/3569381425663241781.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 036 - Anna Laurent on Alagille Syndrome and Her Road to Advocacy https://effieparks.com/podcast/episode-35-sage-graves-estate-planning monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1592454025312-GPN265JG9CPU5LHJWJ9N/-3750004925009286287.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 035 - Sage Graves - Estate Planning, Guardianships, Special Needs Trusts https://effieparks.com/podcast/episode-34-the-ladies-behind-the-edits monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1591850209226-OV4TL7YSF0YRKSMYZM3F/-6587033991918778339.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 034 - The Ladies Behind the Edits https://effieparks.com/podcast/episode-33-loving-large monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1591612701219-WEB2G3Z5R4PI0YMKGH61/-3895302232054930875.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 033 - Loving Large: A Mother's Rare Disease Memoir https://effieparks.com/podcast/lucasdefabio monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1591497796731-USZE14EFY9B59U4GTT0T/-5545766327686411546.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - In Loving Memory of Lucas DeFabio https://effieparks.com/podcast/episode-32-beyquarantine-acceptance-empathy-and-a-better-normal monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1590637599966-FV3940AV3JYYR36D6V80/-3767176605479024339.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 032 - Beyond Quarantine: Acceptance, Empathy and a Better Normal https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ct68-gb66b-6dp5f monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1590064337644-IO2DJW6RD6856A33TAXD/-7443844868415786151.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 031 - Quarantine - What We're Missing, What We're Not, and What We Hope Sticks Around https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ct68-gb66b monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1589427559160-E8WD0399OR7MP2MZQS1A/3830817327991491831.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 030 - Trust Your Instincts; An Early Intervention Can Save Your Life https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ct68 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1588825840997-Q46C3HON9V89AJQXBRH9/-2189633240528623894.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 029 - Put Your Own Oxygen Mask on First https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1588262471216-HAQUBS4USXP5GUDDH4ZQ/Bo+Bigelow Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 028 - Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1587617290857-MLPE90A9MX58NAHA76R6/rose-reif.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 027 - Therapy Check-in with Rose Reif https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1587013605254-8I6PH14ZN0T6PPE4UY7Y/OUAG_IG-m1.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 026 - How Our Rare Kids Can Shape Us https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1586407534207-DQC79BOA769DX9IXQ3E6/OUAG_IG-j1_01.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 025 - A Grandfather's Story of Guardianship, Caregiving and Advocacy https://effieparks.com/podcast/008-choosing-hope-with-jill-hawkins monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1585798164978-5RF4YBQTAHCD5PVPZANN/23185.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 024 - Choosing Hope https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1585236433162-Y4NUJSGMDGELA1O98TZQ/3671699377057074310.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 023 - Mental Health and Coping During Covid-19 https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1584634692360-SBZDDV4HKFHIVB1VYNKS/-5351692656472977224.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 022 - School Closures and FAPE https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1584064807307-SDZHR1ET89WBEYEI6573/18774.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 021 - A Healthier Healthcare for All https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1583414272602-D4GXC1E698Q5N7AXBCT3/IMG_20200303_202339_01.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 020 - Morgan’s Wonderland https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1583414357616-JV19Z73TNLL40KS2G89Y/IMG_20200303_202410_01.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 020 - Morgan’s Wonderland https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1583414119441-WZ3KXJ99AQDRRC8KRJ1G/IMG_20200227_081810_252.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 019 - Neena Nizar and the Jansen's Foundation https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1588909082189-2BV111YTQ0QS98KHHP3H/OnceUponaGene-podcast+%282%29.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 018 - Distressed Genes Aren't Just a Fashion Statement https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1581633665633-GEX7G0UL1JH9YR3MWIPW/IMG_14241.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 017 - The Value of Genetic Counselors https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1581041959710-3XG0TRZG72SYBD1ID5ST/IMG_14211.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 016 - The Lucky Few https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1580443336918-AICJB716JVKTYYADP8XM/Ep+015+-+Graphic.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 015 - Films and Fatherhood https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1579834962941-7R7JFSH5L7BWH731RRUE/IMG_13901.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 014 - A Fellow CTNNB1 Mama https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1579230445645-FH7JBRCT94QOTIROABVJ/IMG_13071.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 013 - Sibling Support https://effieparks.com/podcast/008-tanjs-akayy-jr78y monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1579230676566-S1GM1QYY4ZPSJ41ZT15U/IMG_13091.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 012 - My Favorite Pair of Genes https://effieparks.com/podcast/008-tanjs-akayy-865fe monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1578066707913-RBAU1RMLS55YG1DD9PIV/Episode+011+-+Graphic.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 011 - Rollin' With Spina Bifida https://effieparks.com/podcast/008-tanjs-akayy monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1579230733163-2DNXBH1MM03GL3W3G1K0/IMG_12241.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 010 - My Pfeiffer Pfamily https://effieparks.com/podcast/008-tanjs monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1576806525566-OE7KF8Q8A3BWALIWDSH3/OUAG_IG_L1.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 009 - The Washington State Fathers Network https://effieparks.com/podcast/008 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1576201668660-1KBVIU7PE35Z7FMYSM0Y/Ep+008+-+Graphic.jpg Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 008 - Heartism of the Bitterroot https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-kj9t6 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1588214712791-T6SIDE2HOTSDA8LAUC6O/Mckenzie+Vander+Hoek Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 007 - A Little Love https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ahwy monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1588826106877-XHMGQOKVAOD5SZ65TRF2/Screenshot_20200507-002630.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 006 - The Dadurday Chronicles https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ct68-25rzs monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1588908811117-Q72HEJSQPWQ16ISHZ0U9/Screenshot_20200507-232904.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 005 - It’s Your Party and I’ll Cry If I Want To https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ct68-25rzs-letyz monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1589419163514-4FARV4B5Y7EPBPHQBP00/Screenshot+2020-05-13+at+7.13.47+PM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 004 - Telomere More About It https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9-4rf34-3ct68-gb66b-6dp5f-4emh5 monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1590116178470-D55K6HBMRH0ZVD62600A/Screenshot+2020-05-21+at+10.55.49+PM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 003 - Hospital Hair Don’t Care https://effieparks.com/podcast/episode-2-effie monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1591850391194-WTBMMSXX5UJW5HWTUDJ5/Screenshot+2020-06-11+at+12.39.35+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 002 - Effie https://effieparks.com/podcast/episode-001-effie-and-synthiea monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1592453820371-DK2USGJIG11D73E8DQ37/Screenshot+2020-06-18+at+12.15.11+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - EPISODE 001 - Effie and Synthiea https://effieparks.com/podcast/trailer monthly 0.5 2021-04-29 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1592453820371-DK2USGJIG11D73E8DQ37/Screenshot+2020-06-18+at+12.15.11+AM.png Once Upon A Gene Podcast - ONCE UPON A GENE - Trailer https://effieparks.com/podcast/category/Rare+Disease+Podcast monthly 0.5 https://effieparks.com/podcast/tag/Special+Needs+Podcast monthly 0.5 https://effieparks.com/podcast/tag/Blau+Syndrome monthly 0.5 https://effieparks.com/podcast/tag/Books monthly 0.5 https://effieparks.com/podcast/tag/Rare+Disease monthly 0.5 https://effieparks.com/welcome daily 1.0 2025-03-24 https://images.squarespace-cdn.com/content/v1/58d00f106b8f5b01c8e73f52/1491858427382-L46N6OML0EQRY4L20YNX/color-3.png Welcome https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1614056749561-YRXMNORXC8661IZ587P7/ParksFamily-2021.jpg Welcome https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1572210897215-J94PB5ABOV01HF9L1FTU/myStory.png Welcome https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1616682235476-R4RCVG47F5H485WEP8JB/ouag.jpeg Welcome https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/530aec1f-b831-430f-a283-5c682301fa4d/wego.png Welcome - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/29f40e25-12c5-462a-8d19-14bf6a26c015/disorderwinner.png Welcome - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/5b0992b3-1eb4-4192-8efe-fd30b08dca7f/podcastaward+300.jpg Welcome - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f9bf07fc-78fa-417a-b64a-de6dc407c461/ctnnb1+awareness.png Welcome - Make it stand out CTNNB1 Syndrome Awareness Worldwide https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/366ee19c-64fc-486b-8836-f7fec6ba7dd0/ctnnb1+connect+cure.png Welcome - Make it stand out CTNNB1 Connect & Cure https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/9ca8b561-c457-48d5-a9d0-4f9d0e6f8829/logo-06-150px.png Welcome - Make it stand out CTNNB1 Foundation https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/2fb3fa07-c532-4814-8bbe-59c0212ac9cb/ctnnb1+spain.png Welcome - Make it stand out Asosiación CTNNB1 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/9e92e7f7-3f29-4330-80fe-deb2512dac4c/ctnnb1+italia.png Welcome - Make it stand out CTNNB1 Italia https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/620d8009-7324-473f-8b26-2c4237cb1704/ctnnb1+france+icon.jpg Welcome - Make it stand out Association CTNNB1 France https://effieparks.com/about-1 daily 0.75 2025-08-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1585952932988-ZAAKZ2FVZRC4NOURRH6E/aboutHeader.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1741225209594-KABREHNEDHG4DV7BB5KZ/1.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1589742590717-G5IZ7EJ0QSG9QY607VGR/headshot.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/e9f3ba97-154c-4572-b561-1372c04ce338/blank.jpg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/bdde6864-85e8-4a16-b8bd-831dd81f77aa/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c34107ec-cbe4-4847-a7e3-11a2e4d50318/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c2e4ded9-c8ef-4917-b9b8-6b41a86db839/blank.jpg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f2fbb8ff-633f-4864-ad54-91742040740d/image-asset.png About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a638f3ff-357d-45b5-b597-1e713f582bec/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/14675dc0-186e-49fe-901b-caedb56ebccf/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/fe3c3231-4fa8-4293-a3b1-89b61e2db586/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a42dfe88-3eb2-4361-9159-8c7d7285732c/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/e1263eb8-b7fa-4a86-86ad-b6f68f048f71/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/52684b84-9c88-4cc8-ace4-f88cdb7d09ab/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/992e1cf4-bed0-4ae1-b0cb-a662f867ceef/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/0c036b45-99dc-41b9-8d7a-bb244fa05eb5/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1618982235729-ON4U90LMYT03KVWDNHZX/Image_from_iOS.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1618981139518-HXGQKRL80DG372DIS9L2/ICON-BLACK-TRANSPARENT.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/4ee754b5-7ea0-445e-a9a3-6fef7c34e078/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1615249343463-UJZJCPMZ12NCS4EXRJIA/mercer+island.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1618981036276-U1AYH4YRXY0F5LGYV9GL/mercer+island.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1628744485805-VMPSTCEVHPAMJP6O2YV9/image-asset.jpeg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1615248036831-RQD0TRKMXCHLV5YJO3BZ/finding+happy+copy.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1614053252735-OM0BE72AGWG0OBTZ5NFS/seattles-logo.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1628744048620-8BGMV3HK4JKJAL6AFJ9L/Rare+mamas.jpg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1615248764710-JX8ESFSIFJMOJK4VB6E6/Kantar-Logo-Large-Use-Black+copy.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1618981226439-XZAUQK67PA7C4B1U21FA/OamL_yqL_400x400.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1614052357438-KPNOCXOK2DT59IW508NT/childlife.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607316504031-CZYMY0WESFVASBYBC9WM/two+dudes.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607305205812-U44HE0VX2P9W1N9WR7J6/Because+we+are+Strong.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607317361271-6G9J40WOLNHI0UDLKMJJ/fs.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607490747560-6TK8PY7U0AE9XMA1AEWR/MI.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607313728217-FRSS7ADRBFHXZGM8AUQI/conversations%2Bwith%2Bkaty.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607304900041-TKC0245768HWM1RCU1Z2/Ot4lyfe.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607314379865-PVU32PMXA1UL38LQPL2H/global+genes.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607304606407-8SEFDVWO8F4TVG9NSHFC/the+rare+fair.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607304417145-ZONG0TX5UX6YZSENCL3I/The+chat+connection.jpeg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607310885386-YV7E8K4LUODHOKKAJSTM/nord.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607303811859-17VJCTLZMENY13IMQ7MW/Causepods.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1614051483212-87DAIWOI2GHAFD5A5ZR9/mercer+island.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607489843375-3SSCN1BJYPCELV0Z1TIP/king5.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1614056379953-DNDQ366WIN3TGL18738D/Patient+Stories.png About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607490148746-STMJXV175MB27HYNDSHW/mercer+island.jpg About https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1607319175623-KEIEOMYA6G71MDR79L6A/post+12.jpg About https://effieparks.com/blog daily 0.75 2025-10-16 https://effieparks.com/blog/monopoly monthly 0.5 2025-10-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1760654276132-ZK4570OB8H28J19O2PKI/PXL_20251012_035516805.jpg Blog - A Board Game and a Wake Up Call - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/2025/5/9/when-the-diagnosis-comes-a-journey-through-shock-grief-and-hope monthly 0.5 2025-05-09 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/ee816a39-eefd-457f-8da1-99ff3db0655f/IMG_20250509_124909_438.jpg Blog - When the Diagnosis Comes: A Journey Through Shock, Grief, and Hope - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/2025/3/18/grief monthly 0.5 2025-03-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/b406bb0e-194e-47b7-9127-e4c98446ba20/bud.jpg Blog - Grief as a Constant Companion - The Presence of Unseen Mourning - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/burp monthly 0.5 2025-01-02 https://effieparks.com/blog/2023/12/5/self-care-brought-me-in-and-self-care-made-me-run-out monthly 0.5 2023-12-06 https://effieparks.com/blog/manifesto monthly 0.5 2023-11-15 https://effieparks.com/blog/2023/9/30/sometimes-there-is-no-silver-lining monthly 0.5 2023-09-30 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d9aaa143-cf2e-4462-85d6-81216f1ff819/shutterstock_2213159579.jpg Blog - Sometimes There Is No Silver Lining - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/f1703347-0e3c-4703-b7e2-ce713312da3f/IMG_3422+%281%29.jpg Blog - Sometimes There Is No Silver Lining - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/masterpiece monthly 0.5 2023-08-09 https://effieparks.com/blog/2023/4/22/sharing-rare-disease-stories-is-an-act-of-hope-for-all-of-us monthly 0.5 2023-04-23 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/521edce7-dbf4-4d07-99db-009200aa821c/playground.jpg Blog - Sharing Rare Disease Stories Is An Act Of Hope, For All of Us. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/kara monthly 0.5 2022-11-17 https://effieparks.com/blog/inclusion monthly 0.5 2022-09-30 https://effieparks.com/blog/lovinglucas monthly 0.5 2022-06-30 https://effieparks.com/blog/lookingglass monthly 0.5 2022-05-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/d723be7c-498a-45d4-852b-7426849006ed/katielloyd2.jpg Blog - Life Under The Looking Glass - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/backtothefuture monthly 0.5 2021-08-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1628739103881-R8NZJ6OLUCMTYXIRW0QU/FORD-23.jpg Blog - No Going Back To The Future - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1628740059051-L22LGJHURHLEO3X66HWM/ford2.0.jpg Blog - No Going Back To The Future - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/blog/category/mental+health monthly 0.5 https://effieparks.com/blog/category/Rare+Disease monthly 0.5 https://effieparks.com/blog/tag/Grief monthly 0.5 https://effieparks.com/blog/tag/Parkinsons monthly 0.5 https://effieparks.com/blog/tag/rare+disease monthly 0.5 https://effieparks.com/blog/tag/special+needs monthly 0.5 https://effieparks.com/blog/tag/mental+health monthly 0.5 https://effieparks.com/blog/tag/ctnnb1 monthly 0.5 https://effieparks.com/blog/tag/rare+mom monthly 0.5 https://effieparks.com/blog/tag/Child+Loss monthly 0.5 https://effieparks.com/blog/tag/Menkes monthly 0.5 https://effieparks.com/blog/tag/Rare+disease+dad monthly 0.5 https://effieparks.com/blog/tag/inclusion monthly 0.5 https://effieparks.com/blog/tag/michael+j+fox monthly 0.5 https://effieparks.com/blog/tag/post+partum monthly 0.5 https://effieparks.com/blog/tag/caregiver monthly 0.5 https://effieparks.com/blog/tag/genetic+testing monthly 0.5 https://effieparks.com/blog/tag/rare+disease+podcast monthly 0.5 https://effieparks.com/blog/tag/cerebral+palsy monthly 0.5 https://effieparks.com/blog/tag/CTNNB1 monthly 0.5 https://effieparks.com/blog/tag/copper monthly 0.5 https://effieparks.com/blog/tag/special+needs+podcast monthly 0.5 https://effieparks.com/blog/tag/Grieving monthly 0.5 https://effieparks.com/blog/tag/self-care monthly 0.5 https://effieparks.com/blog/tag/Rare+Disease monthly 0.5 https://effieparks.com/contact-1 daily 0.75 2021-02-02 https://effieparks.com/speakpipe daily 0.75 2020-11-26 https://effieparks.com/contact-3 daily 0.75 2021-02-23 https://images.squarespace-cdn.com/content/v1/58d00f106b8f5b01c8e73f52/1491858427382-L46N6OML0EQRY4L20YNX/color-3.png Contact (Copy) https://effieparks.com/new-page-1 daily 0.75 2021-03-09 https://effieparks.com/ctnnb1 daily 0.75 2023-09-30 https://effieparks.com/resources daily 0.75 2025-08-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/80ac44d7-015c-46ce-b460-c440950c2bb3/wwa.webp Resources https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/a58d61c9-13c6-4b22-a088-6dbb22a9964b/Untitled+design+%2837%29.png Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/b2efb0e6-57f4-42d0-b824-2972e17a850f/Zebra+quotes+%2826%29.png Resources https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/363560df-35e2-420c-9882-1b2e55fe2a5b/Untitled+design.png Resources https://effieparks.com/themagicofourstories daily 0.75 2026-01-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/c21f7806-47ba-4b59-abeb-3fc9659cc270/Once+Upon+A+Gene-6.png The Magic Of Our Stories Interest Form - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://effieparks.com/merch daily 0.75 2023-12-18 https://effieparks.com/merch/once-upon-a-gene-crew-neck monthly 0.5 2024-03-01 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1709333363958-8JIMJ6S7VXXNVVTQILRR/unisex-crew-neck-sweatshirt-light-pink-front-65e25b65c42f7.jpg Rare Disease Podcast Merch - Once Upon A Gene Crew Neck https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1709333365314-W408BTXHWYN3Q07SON32/unisex-crew-neck-sweatshirt-black-front-65e25b65c5e37.jpg Rare Disease Podcast Merch - Once Upon A Gene Crew Neck https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1709333366567-7ZHNWUG6C7XTGCT06VIA/unisex-crew-neck-sweatshirt-sport-grey-front-65e25b65c64aa.jpg Rare Disease Podcast Merch - Once Upon A Gene Crew Neck https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1709333367598-IOA1EP5PQO0XJL8J08TV/unisex-crew-neck-sweatshirt-white-front-65e25b65c719d.jpg Rare Disease Podcast Merch - Once Upon A Gene Crew Neck https://effieparks.com/merch/once-upon-a-gene-therapy-hoodie monthly 0.5 2024-01-17 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521944633-81E54PLMU7PFE9EV6V0F/unisex-premium-hoodie-carbon-grey-front-65a8330947453.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521945654-AOG570HL9H8MCD5XRFLA/unisex-premium-hoodie-black-front-65a833094aa6f.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521946669-U0I5WO29RMPDG3G4E2OB/unisex-premium-hoodie-black-back-65a833094ae70.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521947952-INVT7EUKH2PSSDCVM0FG/unisex-premium-hoodie-carbon-grey-back-65a833094b36a.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521948981-L0INFHIIUWM8623Z55QN/unisex-premium-hoodie-sky-blue-front-65a833094c334.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521950301-V02ESN2BMZS9S4GUXV7M/unisex-premium-hoodie-sky-blue-back-65a833094fe4e.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521951317-MEO8FMIU45SP0D6QOH8R/unisex-premium-hoodie-white-front-65a8330954953.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1705521952268-L0T6WRICFVJY8LSYG86D/unisex-premium-hoodie-white-back-65a833095a82f.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Hoodie https://effieparks.com/merch/once-upon-a-gene-therapy-t-shirt monthly 0.5 2023-12-19 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702945238647-16ANPTKGYV7P5IERU9KZ/womens-relaxed-t-shirt-athletic-heather-front-6580e1b5330fa.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702945244348-JE9JKSZLFA6BRSZR7BO5/womens-relaxed-t-shirt-navy-front-6580e1b534399.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702945246355-IEXKNRNIBZ90ZZO30ZIN/womens-relaxed-t-shirt-navy-back-6580e1b5344ea.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702945253557-DA67UUXHAAIARE2X6J3S/womens-relaxed-t-shirt-athletic-heather-back-6580e1b5345ac.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702945256321-NVE7JCBF156X9GPQPKOO/womens-relaxed-t-shirt-white-front-6580e1b53477f.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702945258391-M6M38FHVQ6GK7HWZNGZT/womens-relaxed-t-shirt-white-back-6580e1b5349dd.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy T-Shirt https://effieparks.com/merch/rare-mom-era-t-shirt monthly 0.5 2023-12-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702919409462-K6I1ZOAWBD63M66KMZXJ/womens-relaxed-t-shirt-navy-front-65807ce793a08.jpg Rare Disease Podcast Merch - Rare Mom Era T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702919412328-EWUCXAG5LT1OXI13YHC6/womens-relaxed-t-shirt-navy-back-65807ce794b78.jpg Rare Disease Podcast Merch - Rare Mom Era T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702919413334-4DC0VEUHAV4LESDZ4KAL/womens-relaxed-t-shirt-pink-front-65807ce794c5b.jpg Rare Disease Podcast Merch - Rare Mom Era T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702919414328-B850AAZABBJYXPXT6VEI/womens-relaxed-t-shirt-pink-back-65807ce794d9c.jpg Rare Disease Podcast Merch - Rare Mom Era T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702919415361-PTKFNSL9WMYY8ZFOSF1E/womens-relaxed-t-shirt-white-front-65807ce794ea5.jpg Rare Disease Podcast Merch - Rare Mom Era T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702919418351-KEG3B57OOSPEUZW8DG8J/womens-relaxed-t-shirt-white-back-65807ce795053.jpg Rare Disease Podcast Merch - Rare Mom Era T-Shirt https://effieparks.com/merch/once-upon-a-gene-therapy-tank monthly 0.5 2023-12-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918820413-IRSHUIC3EE17A58F3FD9/unisex-muscle-shirt-white-front-65807a9baf9d8.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Tank https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918821444-OCSX0UTT3M66ODDG3QLC/unisex-muscle-shirt-black-front-65807a9bb0844.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Tank https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918822501-TNJNWMIL5KA4Y46D2JXS/unisex-muscle-shirt-black-back-65807a9bb098b.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Tank https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918823491-MNBX4QAX2B9SFQOEFC5P/unisex-muscle-shirt-white-back-65807a9bb0a6d.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy Tank https://effieparks.com/merch/once-upon-a-gene-therapy-1 monthly 0.5 2023-12-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918489480-URZVFM7D89PVGRUY6RWH/unisex-crew-neck-sweatshirt-black-front-6580794aacd05.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918492359-7FJS0M9NOYXCHX00V1M8/unisex-crew-neck-sweatshirt-black-back-6580794aaf18a.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918495568-X22S4P964AH6EOBZTEEQ/unisex-crew-neck-sweatshirt-sport-grey-front-6580794aaf542.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702918497624-FSWMI8UVC0JNFY0ZSMST/unisex-crew-neck-sweatshirt-sport-grey-back-6580794aafe44.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://effieparks.com/merch/once-upon-a-gene-therapy monthly 0.5 2023-12-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702868741489-OO8A7QIGLJID9ETY7J1P/unisex-crew-neck-sweatshirt-white-front-657fb6f74ed4a.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702869108442-F2CGRP1YZFBQBEE11FBC/unisex-crew-neck-sweatshirt-white-front-657fb8698dbcb.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702869110340-0B3JA6LZHUKQMB9EKUCX/unisex-crew-neck-sweatshirt-white-back-657fb8698f396.jpg Rare Disease Podcast Merch - Once Upon A Gene Therapy https://effieparks.com/merch/womens-athletic-t-shirt-once-upon-a-gene-therapy monthly 0.5 2023-12-18 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702859489674-FX5XY6TE4I2TIEE2W2AF/all-over-print-womens-athletic-t-shirt-white-front-657f92d5e4163.jpg Rare Disease Podcast Merch - Women's Athletic T-shirt - Once Upon A Gene Therapy https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1702859491416-RCAMWFVG12MTMSRJJ8JX/all-over-print-womens-athletic-t-shirt-white-back-657f92d5e4ef2.jpg Rare Disease Podcast Merch - Women's Athletic T-shirt - Once Upon A Gene Therapy https://effieparks.com/merch/rare-mom-era-pink-sweatshirt monthly 0.5 2023-11-22 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700675756225-PUAX3PSCQKQWQ2C5LUMI/unisex-crew-neck-sweatshirt-light-pink-front-655e409e3853c.jpg Rare Disease Podcast Merch - Rare Mom Era Pink Sweatshirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700675757331-92K1MAHBOCTIT5Z5QXL8/unisex-crew-neck-sweatshirt-light-pink-back-655e409e398b4.jpg Rare Disease Podcast Merch - Rare Mom Era Pink Sweatshirt https://effieparks.com/merch/rare-mom-era-black-sweatshirt monthly 0.5 2023-11-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700515075404-6SYX0VAEF8CIANTPLZVM/unisex-crew-neck-sweatshirt-black-front-655bccf76c58d.jpg Rare Disease Podcast Merch - Rare Mom Era Black Sweatshirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700515076680-7Q7L46XLR0UV3TMNF3U9/unisex-crew-neck-sweatshirt-black-back-655bccf76d584.jpg Rare Disease Podcast Merch - Rare Mom Era Black Sweatshirt https://effieparks.com/merch/rare-mom-era-sweatshirt monthly 0.5 2023-11-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700514335685-I3MX1JXDKJ2NG5SAHUAE/unisex-crew-neck-sweatshirt-light-pink-front-655bc9e2b14f0.jpg Rare Disease Podcast Merch - Rare Mom Era Sweatshirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1700514337343-OD5UY5PYOOEVK0BAGB3Z/unisex-crew-neck-sweatshirt-light-pink-back-655bc9e2b295e.jpg Rare Disease Podcast Merch - Rare Mom Era Sweatshirt https://effieparks.com/merch/bubble-free-dadvocate-stickers-1 monthly 0.5 2023-05-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683916248803-KDFCBI2V1R0A9A6NSK9U/kiss-cut-stickers-white-4x4-front-645e85d586cd8.jpg Rare Disease Podcast Merch - Bubble-free DADvocate stickers https://effieparks.com/merch/bubble-free-dadvocate-stickers monthly 0.5 2023-05-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683916221204-58X5T83GVJY9JTNM8T4J/kiss-cut-stickers-white-4x4-default-645e85b9d939f.jpg Rare Disease Podcast Merch - Bubble-free DADvocate stickers https://effieparks.com/merch/womens-relaxed-t-shirt monthly 0.5 2023-05-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683915424292-XJU3CTTESTZHLD6I5PW2/womens-relaxed-t-shirt-white-front-645e829adf24f.jpg Rare Disease Podcast Merch - Women's Relaxed T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683915425674-GENW3FBYEFN2ICTDBQO3/womens-relaxed-t-shirt-athletic-heather-front-645e829ae3016.jpg Rare Disease Podcast Merch - Women's Relaxed T-Shirt https://effieparks.com/merch/dadvocate-mens-classic-tee-2 monthly 0.5 2023-05-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683913976999-PDS5J729VMRXNLKSDQIP/mens-classic-tee-sport-grey-front-645e7cf2b5ed7.jpg Rare Disease Podcast Merch - DADvocate Men's classic tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683913978041-ICQTS0ICB24WSUU1BA1Q/mens-classic-tee-black-front-645e7cf2b9178.jpg Rare Disease Podcast Merch - DADvocate Men's classic tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683913978941-UA75BZHYZ8RYMSXE3ANG/mens-classic-tee-white-front-645e7cf2b9458.jpg Rare Disease Podcast Merch - DADvocate Men's classic tee https://effieparks.com/merch/dadvocate-mens-classic-tee-1 monthly 0.5 2023-05-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683913804585-3OIVU7SAXNCKWHOJRAH5/mens-classic-tee-sport-grey-front-645e7c456a20f.jpg Rare Disease Podcast Merch - DADvocate Men's classic tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683913805716-F0SUSP2OLQ4SRQ9P5HJJ/mens-classic-tee-black-front-645e7c456b7b7.jpg Rare Disease Podcast Merch - DADvocate Men's classic tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1683913806566-ANRCTCJLVS51JK66HBHH/mens-classic-tee-white-front-645e7c456bb41.jpg Rare Disease Podcast Merch - DADvocate Men's classic tee https://effieparks.com/merch/once-upon-a-gene-crop-tee-1 monthly 0.5 2022-02-26 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1645833833527-EKWHN6TLAXD77URR7OOX/all-over-print-crop-tee-white-front-62196e646affe.jpg Rare Disease Podcast Merch - Once Upon A Gene Crop Tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1645833834151-RKLAO53BAC52B84MZWOZ/all-over-print-crop-tee-white-right-62196e646b179.jpg Rare Disease Podcast Merch - Once Upon A Gene Crop Tee https://effieparks.com/merch/disability-is-diversity-womens-t-shirt monthly 0.5 2022-02-25 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1645833574184-W85JCX1LJ86B93KZNWM8/all-over-print-womens-crew-neck-t-shirt-white-front-62196d616e76f.jpg Rare Disease Podcast Merch - Disability Is Diversity Women's T-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1645833574823-SA8XFSVSLY7JUCBNHZTQ/all-over-print-womens-crew-neck-t-shirt-white-back-62196d616e855.jpg Rare Disease Podcast Merch - Disability Is Diversity Women's T-shirt https://effieparks.com/merch/disability-is-diversity-crop-tee monthly 0.5 2022-02-21 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1645403169696-IU2Y5QUQNI694VS4DP0Y/all-over-print-crop-tee-white-front-6212dc1c1f67c.jpg Rare Disease Podcast Merch - Disability Is Diversity Crop Tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1645403170378-BCYJVG7HBQC2869ZX2YW/all-over-print-crop-tee-white-left-6212dc1c1f753.jpg Rare Disease Podcast Merch - Disability Is Diversity Crop Tee https://effieparks.com/merch/disability-is-diversity-youth-long-sleeve-tee monthly 0.5 2021-11-20 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1637442657212-ASZRJASM5KPXG0708EP1/youth-long-sleeve-tee-black-front-6199645b81a1b.jpg Rare Disease Podcast Merch - Disability Is Diversity - Youth long sleeve tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1637442657972-IO75L843RYJJXLSRA4CS/youth-long-sleeve-tee-black-left-front-6199645b81b03.jpg Rare Disease Podcast Merch - Disability Is Diversity - Youth long sleeve tee https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1637442658690-92WP9Q3IQ4ET3ESBP3NN/youth-long-sleeve-tee-black-right-front-6199645b81b75.jpg Rare Disease Podcast Merch - Disability Is Diversity - Youth long sleeve tee https://effieparks.com/merch/tell-your-story-or-jot-down-your-ideas-throughout-the-day-i-like-to-keep-a-notebook-and-write-down-moments-in-the-day-that-i-dont-want-to-forget monthly 0.5 2021-11-13 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1636767339681-IPO1YXD6CF8WL7TFSE40/spiral-notebook-white-front-618f166340ef3.jpg Rare Disease Podcast Merch - Tell your story or jot down your ideas throughout the day. I like to keep a notebook and write down moments in the day that I don't want to forget. https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1636767340224-VXBZQHIDLBOMUBBTFUFB/spiral-notebook-white-back-618f166340fa6.jpg Rare Disease Podcast Merch - Tell your story or jot down your ideas throughout the day. I like to keep a notebook and write down moments in the day that I don't want to forget. https://effieparks.com/merch/disability-is-diversity-kids-hoodie monthly 0.5 2021-07-16 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1626473734476-XN768JOSXB0AS7LSDD72/kids-hoodie-jet-black-front-60f20502b9563.jpg Rare Disease Podcast Merch - Disability Is Diversity Kids Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1626473735260-YW96ORO5JOOIFZQ410YR/kids-hoodie-jet-black-right-front-60f20502b96c5.jpg Rare Disease Podcast Merch - Disability Is Diversity Kids Hoodie https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1626473735847-TTXQKDR7NXE9W1JVO1KZ/kids-hoodie-jet-black-left-front-60f20502b97a7.jpg Rare Disease Podcast Merch - Disability Is Diversity Kids Hoodie https://effieparks.com/merch/disability-is-diversity-unisex-hoodie-1 monthly 0.5 2021-11-14 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1626473638075-TDUAPF86B5ZIP0JFZZE8/unisex-premium-hoodie-black-front-60f204a1b7d4b.jpg Rare Disease Podcast Merch - Disability Is Diversity Unisex Hoodie https://effieparks.com/merch/disability-is-diversity-unisex-tank-top monthly 0.5 2021-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625613275314-DRUUGRMO6NK1MNQZNCUX/unisex-tri-blend-tank-top-athletic-grey-front-60e4e3d7bb87b.jpg Rare Disease Podcast Merch - Disability Is Diversity Unisex Tank Top https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625613275900-009ZX79I6ZZ3NZ52ROCY/unisex-tri-blend-tank-top-tri-black-front-60e4e3d7bb95d.jpg Rare Disease Podcast Merch - Disability Is Diversity Unisex Tank Top https://effieparks.com/merch/bubble-free-stickers monthly 0.5 2021-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611631915-6GN52JK987BOMONMRC0D/kiss-cut-stickers-3x3-default-60e4dd6c01055.jpg Rare Disease Podcast Merch - Bubble-free stickers https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611632383-89IHD1LUA60HBA3WEFEW/kiss-cut-stickers-4x4-default-60e4dd6c0110f.jpg Rare Disease Podcast Merch - Bubble-free stickers https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611632857-E83DF6Z1NAI9ZUHF588Z/kiss-cut-stickers-5.5x5.5-default-60e4dd6c01181.jpg Rare Disease Podcast Merch - Bubble-free stickers https://effieparks.com/merch/disability-is-diversity-bubble-free-stickers monthly 0.5 2021-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611545187-D1N1CGH3AHZYUHV19SPW/kiss-cut-stickers-3x3-default-60e4dd13b30ae.jpg Rare Disease Podcast Merch - Disability Is Diversity Bubble-free stickers https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611545782-3HVNIB2N52C4Y3KHJQGU/kiss-cut-stickers-4x4-default-60e4dd13b314c.jpg Rare Disease Podcast Merch - Disability Is Diversity Bubble-free stickers https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611546388-6TZY51KMFLK4CRTFBZM5/kiss-cut-stickers-5.5x5.5-default-60e4dd13b31ad.jpg Rare Disease Podcast Merch - Disability Is Diversity Bubble-free stickers https://effieparks.com/merch/disability-is-diversity-toddler-jersey-t-shirt-1 monthly 0.5 2021-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611299002-IEM9XMRX01IP0SB0S29M/toddler-jersey-t-shirt-heather-front-60e4dc1d304a1.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611299614-E7WRANU7HCW80VUGVVV8/toddler-jersey-t-shirt-black-front-60e4dc1d307e2.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611300073-B8WZYBY0ACS57YLU1VPA/toddler-jersey-t-shirt-black-right-front-60e4dc1d308db.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611300557-XR9F6PFD03AQ1920BP4Y/toddler-jersey-t-shirt-black-left-front-60e4dc1d309af.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611301035-9STGOX8RDI067SZMA25V/toddler-jersey-t-shirt-black-front-2-60e4dc1d30a73.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611301493-UK4I7TYDJ3YUC3F221ZB/toddler-jersey-t-shirt-navy-front-60e4dc1d30b95.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611302264-PM6DZMNLB4F637KG6CEV/toddler-jersey-t-shirt-navy-right-front-60e4dc1d30d1a.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611302742-X8UYUX5O54EXPECU1TQ0/toddler-jersey-t-shirt-navy-left-front-60e4dc1d30e6d.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611303286-S8VCMG34NDLPDA9YE27I/toddler-jersey-t-shirt-navy-front-2-60e4dc1d30fa6.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611303764-D7DFGIADG04OFWO1W8ZU/toddler-jersey-t-shirt-hot-pink-front-60e4dc1d31126.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611304338-HQV5G4GN7R4WW8XHFBYA/toddler-jersey-t-shirt-hot-pink-right-front-60e4dc1d312f4.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611304863-QQTL49MFOB2PZCSYDTKH/toddler-jersey-t-shirt-hot-pink-left-front-60e4dc1d314da.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611305380-P8YH3AW0GA62B6ENB00F/toddler-jersey-t-shirt-hot-pink-front-2-60e4dc1d31714.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611305988-8WL2YICBRT525UXR1E5I/toddler-jersey-t-shirt-heather-right-front-60e4dc1d3195e.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611306573-TM5UKM5UZSTPV4BBH2EN/toddler-jersey-t-shirt-heather-left-front-60e4dc1d31bf6.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611307343-KIJKAT14J3QDYIKRM9Z2/toddler-jersey-t-shirt-heather-front-2-60e4dc1d31e0f.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611308038-GX3K79UPUQKYLET3WAL5/toddler-jersey-t-shirt-light-blue-front-60e4dc1d3204d.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611308929-JLDGO2FBIKLK6MZDQ7DJ/toddler-jersey-t-shirt-light-blue-right-front-60e4dc1d322e9.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611309456-67TL11D2SE8G4WY5OE92/toddler-jersey-t-shirt-light-blue-left-front-60e4dc1d325c5.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611309937-73UIPZ1DDNQ5CYVSCYAH/toddler-jersey-t-shirt-light-blue-front-2-60e4dc1d328bc.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611310440-1LD9OXJJN4LY4OJYBQ39/toddler-jersey-t-shirt-white-front-60e4dc1d32bfd.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611310904-UUH8B6XTOI8Z9C1GNC8B/toddler-jersey-t-shirt-white-right-front-60e4dc1d32f86.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611311385-2RQOV7ZLY08IDODRSSR5/toddler-jersey-t-shirt-white-left-front-60e4dc1d33319.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625611311933-AJZ6NMUG0KHJS4VJN6F5/toddler-jersey-t-shirt-white-front-2-60e4dc1d33665.jpg Rare Disease Podcast Merch - Disability Is Diversity Toddler jersey t-shirt https://effieparks.com/merch/ouag-dna-unisex-t-shirt monthly 0.5 2021-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597672609-MH7YMV7ZH2IHMTS7LDA8/unisex-premium-t-shirt-white-front-60e4a6e255d53.jpg Rare Disease Podcast Merch - OUAG DNA Unisex T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597673271-GTDME332YT73HRF5Q012/unisex-premium-t-shirt-black-heather-front-60e4a6e25660a.jpg Rare Disease Podcast Merch - OUAG DNA Unisex T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597673929-DVHY449ZLHUSDOMTK76O/unisex-premium-t-shirt-black-heather-back-60e4a6e2568fa.jpg Rare Disease Podcast Merch - OUAG DNA Unisex T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597674566-F9HP4NWQM5VPLFUU586Z/unisex-premium-t-shirt-athletic-heather-front-60e4a6e256b4f.jpg Rare Disease Podcast Merch - OUAG DNA Unisex T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597675419-6XJUYCKDU59KZNF0YZ05/unisex-premium-t-shirt-athletic-heather-back-60e4a6e25725a.jpg Rare Disease Podcast Merch - OUAG DNA Unisex T-Shirt https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597676061-9W2PEKTS5WR3P9IEQEZ8/unisex-premium-t-shirt-white-back-60e4a6e257a14.jpg Rare Disease Podcast Merch - OUAG DNA Unisex T-Shirt https://effieparks.com/merch/hospital-hair-dont-care-hat monthly 0.5 2021-07-06 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597557106-2JODVBBZVYKRZ4MNSGAY/denim-hat-light-blue-front-60e4a67182264.jpg Rare Disease Podcast Merch - Hospital Hair Don't Care Hat https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597558066-PPY7OOTDJTDJ59FX7W2U/denim-hat-black-front-60e4a67182414.jpg Rare Disease Podcast Merch - Hospital Hair Don't Care Hat https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597558800-GLO77T86J6XAED8FJKWU/denim-hat-blue-front-60e4a67182559.jpg Rare Disease Podcast Merch - Hospital Hair Don't Care Hat https://effieparks.com/merch/diversitymug monthly 0.5 2021-07-12 https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597223442-IM3TA6WDO5FVQ6FNY4GB/white-glossy-mug-15oz-handle-on-right-60e4a5227d533.jpg Rare Disease Podcast Merch - White glossy mug https://images.squarespace-cdn.com/content/v1/59dec27ebebafb493797730d/1625597224022-0X0CHPL69PR7FTVZNBFQ/white-glossy-mug-15oz-handle-on-left-60e4a5227d615.jpg Rare Disease Podcast Merch - White glossy mug