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Effie Parks, originally from beautiful Montana, has become a guiding light in the rare disease community following her son Ford's diagnosis with CTNNB1 syndrome. Settling in Washington, she transformed her family's journey into a crusade for advocacy, support, and empowerment for families navigating similar challenges. As the host of the "Once Upon a Gene" podcast, Effie has been recognized for several awards including WEGO Health and Podcast Magazine for her impactful storytelling and resource-sharing in the realm of rare genetic disorders.

Effie extends her advocacy through speaking engagements at medical and patient advocacy conferences, sharing her experiences and insights from her work to bridge the gap between all rare disease stakeholders. Her skill in community engagement, developed through her advocacy, empowers her efforts in building a supportive network and raising awareness.

With a mission to leave the world better than she found it, Effie is dedicated to fostering a more informed and empathetic environment for those impacted by rare diseases. Her work embodies resilience and compassion, inspiring and uniting the rare disease community. Effie’s journey is not just about sharing stories, it's about driving change and creating a lasting impact in the world of rare genetic conditions.


Need a gift idea for Ford?

If you're looking for the perfect gift for Ford, consider a contribution to his Washington State ABLE Savings Plan account.

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In the Press

 
 

BEYOND THE DIAGNOSIS

March, 2022

 

BUMP IN THE ROAD- Effie Parks: Being a Mom to a Disabled Child

December 3, 2021

 

HEALTHCARE IT TODAY- Better Understand the Patient and Caregiver Perspective

January 27, 2022

 

INSIDE PRECISION MEDICINE- The Lighthouse

December 1, 2021

PODCAST MAGAZINE- 2022 40 Under 40 in Podcasting

April 4, 2022

THE HEALTH DESIGN PODCAST- Effie Parks, Patient Advocate

January, 2022

 

HIT LIKE A GIRL POD- HITea with Grace

November 29, 2021

HEALTH PODCAST NETWORK-Out of Patients

March 22, 2022

COEUR d’ALENE/POST FALLS PRESS- Ford Tough

December 15, 2021

 

CHILD LIFE ON CALL- The Dad’s Perspective: A Son with a Rarer Genetic Disease

October 27, 2021

BRAVE TOGETHER- When You Feel Betrayed by the Professionals

October, 2021

THE VIRTUAL CAMPFIRE- Bringing Out the Strength in Others in Combating Rare Diseases with Effie Parks

April 13, 2021

EDU ME- Special Needs Children, Parenting, and Self Care

February 23, 2021

HEALTH UNION- 10th Annual WEGO Health Awards Winners

September 28, 2021

MERCER ISLAND REPORTER- Residents Show Their Stripes on Rare Disease Day

March 2, 2021

MERCER ISLAND REPORTER- Islanders Embrace Families Whose Children Have Rare Diseases

February 12, 2021

RARE VOICES- Effie Parks, Podcast Host, Once Upon A Gene, Mother To A Rare Disease

July 22, 2021

FINDING HAPPY- Power of Connection and Podcasts

March 1, 2021

SEATTLE’S CHILD- Mercer Island Mom Uses Storytelling Talents to Make World a More Inclusive Place

February 10, 2021

RARE MAMAS- Lighting the way with Once Upon a Gene Podcast Host Effie Parks

July 7, 2021

KANTAR- Living with CTNNB1 Syndrome

February 25, 2021

BLOODSTREAM- Hemlibra in Canada, Amy’s Birds, and Once Upon A Genes’ Effie Parks

February 5, 2021

CHILD LIFE ON CALL- Effie's Story - A Son with a Rare Disease, CTNNB1

January 27, 2021

TWO DISABLED DUDES- She Created What She Needed

November 23, 2020

BECAUSE WE ARE STONG- Effie Parks & Once Upon a Gene

November 17, 2020

FAMILY SUPPORT INSTITUTE OF BC- Finding a Balance While Being a Caregiver

November 17, 2020

MY MERCER ISLAND- Effie Parks’ Unexpected Encounter in Mercerdale Park Leads to Hope and Connection

November 17, 2020

CONVERSATIONS WITH KATY- Not Just Another Baby Story

September 30, 2020

OT4LYFE- Pediatric Therapy From the Parent’s Perspective with Effie Parks

September 28, 2020

GLOBAL GENES- Rare Together Watch Together: Film Selection from The Disorder Channel

September 16, 2020

THE RARE FAIR- Find Your People

September 3, 2020

THECHATCONNECTION- Back to School: Special Needs Edition

August 22, 2020

NORD- Stress Management: Emotional-Wellbeing for the Caregiver

July 19, 2020

CAUSEPODS- Shedding Light on Rare Genetic Disabilities with Effie Parks of Once Upon A Gene

May 7, 2020

MERCER ISLAND REPORTER- Mercer Island Family Raises Awareness for Rare, Undiagnosed Diseases

February 19, 2020

KING 5- Mercer Island Mom Creates Podcast to Build Healthy Dialogue About Kids with Disabilities

February 11, 2020

PATIENT STORIES- New in the Family: Ford and CTNNB1 with Effie Parks

February 5, 2020

MERCER ISLAND REPORTER- Mercer Island Mom Creates Podcast About Raising Children with Disabilities

January 16, 2020

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