Rare Disease Podcast — Once Upon A Gene

Once Upon A Gene Podcast - click on an episode below to start listening!

Posts in Rare Disease 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

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

Hear how this family’s eight-year search led them to discover their son’s ultra-rare CLCN6 gene mutation.

Rare Disease PodcastEffie ParksJanuary 2, 2025Rare Disease, Special Needs 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

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

Megan opens up about living with grief, disability, parenting challenges, fashion passions, crafting pursuits, and her love of nature—without confining herself to a single niche.

Rare Disease PodcastEffie ParksDecember 19, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 250 - The Gift of Grace: A Holiday Heart-to-Heart for Caregivers

ONCE UPON A GENE - EPISODE 250 - The Gift of Grace: A Holiday Heart-to-Heart for Caregivers

The holidays can be a beautiful time of connection, joy, and celebration—but for caregivers, it can also be a season that amplifies the weight we carry every day.

Rare Disease PodcastEffie ParksDecember 12, 2024Rare Disease, Special Needs Podcast

Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community

Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community

Rare Disease PodcastEffie ParksNovember 27, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 248 - Ready for Take Off: Mission for Accessible Air Travel & Disability Advocacy, with Mindy Henderson

ONCE UPON A GENE - EPISODE 248 - Ready for Take Off: Mission for Accessible Air Travel & Disability Advocacy, with Mindy Henderson

Rare Disease PodcastEffie ParksNovember 14, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 247-Hospital Survival Kit - Advocating for Your Child Without Losing Yourself

ONCE UPON A GENE - EPISODE 247-Hospital Survival Kit - Advocating for Your Child Without Losing Yourself

Rare Disease PodcastEffie ParksOctober 17, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 246 - Real-World Self-Care for Caregivers - Tiny Wins, Small Shifts, and Taking Back Your Power

ONCE UPON A GENE - EPISODE 246 - Real-World Self-Care for Caregivers - Tiny Wins, Small Shifts, and Taking Back Your Power

Rare Disease PodcastEffie ParksOctober 10, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 244 - Beginners Guide to Rare Disease - Wisdom from Others Who Have Been There

ONCE UPON A GENE - EPISODE 244 - Beginners Guide to Rare Disease - Wisdom from Others Who Have Been There

Rare Disease PodcastEffie ParksSeptember 26, 2024Rare Disease, Special Needs 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

ONCE UPON A GENE - EPISODE 245 - Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie

Rare Disease PodcastEffie ParksSeptember 19, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 243 - Chasing Glimmers - Electric Love Disability Retreats

ONCE UPON A GENE - EPISODE 243 - Chasing Glimmers - Electric Love Disability Retreats

Rare Disease PodcastEffie ParksSeptember 12, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 242 - Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections

ONCE UPON A GENE - EPISODE 242 - Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections

Rare Disease PodcastEffie ParksSeptember 5, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 241 - Chasing Glimmers - What's Glimmering with Katie Lloyd

ONCE UPON A GENE - EPISODE 241 - Chasing Glimmers - What's Glimmering with Katie Lloyd

Rare Disease PodcastEffie ParksAugust 29, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 240 - A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She

ONCE UPON A GENE - EPISODE 240 - A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She

Rare Disease PodcastEffie ParksAugust 22, 2024Rare Disease, Special Needs 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

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

Rare Disease PodcastEffie ParksAugust 15, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 238 - Where the Glimmers Can Surface

ONCE UPON A GENE - EPISODE 238 - Where the Glimmers Can Surface

Rare Disease PodcastEffie ParksAugust 8, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 237 - Join Us for The Global Genes Week In Rare

ONCE UPON A GENE - EPISODE 237 - Join Us for The Global Genes Week In Rare

Rare Disease PodcastEffie ParksAugust 1, 2024Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 236 - Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer

ONCE UPON A GENE - EPISODE 236 - Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer

Rare Disease PodcastEffie ParksJuly 25, 2024Rare Disease, Special Needs 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

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

Rare Disease PodcastEffie ParksJuly 18, 2024Rare Disease, Special Needs 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

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

Rare Disease PodcastEffie ParksJuly 11, 2024Rare Disease, Special Needs 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

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

Rare Disease PodcastEffie ParksJuly 4, 2024Rare Disease, Special Needs Podcast