Effie Parks, founder and host of Once Upon A Gene, mom, and rare disease advocate.
Effie’s son Ford has a rare disease called CTNNB1 syndrome, which was the catalyst for her becoming an advocate, podcast host and more.
Through Effie’s personal journey, she has amassed a weath of information, wisdom and resources. She works to better things for everyone in the rare disease and disability community and she can’t see herself ever stopping.
Effie is an inspiration and a very bright light, that is much needed. This episode is full of insightful revelations and helpful information. Learn more about Effie Parks.
Effie also offers some cool merch on her site.
Episode 2: In this special episode, we’re honoring Rare Disease Day and the incredible families and individuals navigating rare conditions. Join us as we chat with renowned host of the Once Upon A Gene podcast, Effie Parks. Effie explores the challenges, triumphs, and the need for greater awareness and advocacy in the rare disease and disability community. This episode is inspiring, funny, comforting and includes great covnersation between The Mobility Mindset podcast hosts Sara & Marc, and Effie.
Episode Date: Tuesday, February 18, 2025
The Mobility Mindset with Trexo Robotics podcast launched on February 4, 2025. The motiviation for the podcast was connecting with our community, bringing conversation, laughter, information and sharing resources. Episodes come out bi-weekly on Tuesdays. You can find us on any platform you listen to podcasts on. Visit our podcast episode directory page to let us know if you want to be a guest on the show.
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