Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss

About this episode

Effie Parks and Geraldine Bliss discuss the importance of genetic testing and how it empowers families in their healthcare journey.

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…

People in this episode

Hosts: Effie Parks, Effie

Guest: Geraldine Bliss

Topics covered

• genetic testing
• Phelan-McDermid syndrome
• family empowerment
• healthcare
• diagnosis

Keywords

• CureSHANK
• Start Genetic
• rare diseases
• healthcare access
• support resources

Mentioned in this episode

Products: Start Genetic, CureSHANK, Phelan-McDermid Syndrome Foundation

Books & works: Once Upon a Gene

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