Once Upon A Gene is a Podcast for families living with rare diseases. There are personal stories and resources shared to help connect us with our community. Although I only linked Apple podcast below, Once Upon A Gene is available on any player of your choice and has a YouTube channel.

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.

Two Disabled Dudes: https://twodisableddudes.com/

"Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir" - Dr. David Fajgenbaum: https://amzn.to/3OpBzLg

"The Ataxian" documentary (Amazon Prime): https://amzn.to/4bg53oS

Connect to Learn More:

Website: https://effieparks.com/

Email: hello@onceuponagene.com

FB: @OnceUponAGene

IG: @onceuponagene.podcast

Apple Podcast: https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347

Episode Transcript: https://docs.google.com/document/d/1Q6gNJc9HGU7HRMdEA8I2R3G-fHJI8qdT/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

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