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In this episode of Once Upon a Gene, host Effie Parks welcomes Geraldine Bliss — rare mom, co-founder of CureSHANK, and the powerhouse behind Start Genetic, a new movement empowering families to take control of their genetic testing journey.
Geraldine shares her decades-long experience as mom to Charles, a 27-year-old living with Phelan-McDermid syndrome, and how one test unlocked a world of understanding, care, and connection. Together, Effie and Geraldine dig into the real-world impact of genetic testing — what to ask for, when to push for answers, and how knowing the cause changes everything.
They cover:
🧬 When and how to pursue genetic testing or re-testing
🧩 How a diagnosis can transform care, support, and research
🚫 Common myths and roadblocks that stop families from getting tested
🧠 Why “not knowing” limits treatment options — and what to do about it
💪 Action steps and resources you can use today
Effie and Geraldine leave listeners with a clear message: You don’t have to wait for the system to hand you answers. You can start genetic.
✨ Resources Mentioned:
Start Genetic
CureSHANK
Phelan-McDermid Syndrome Foundation
💬 Quote from the Episode: “Getting a diagnosis doesn’t change who your child is — it changes what you can do for them.” — Geraldine Bliss
