Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy
Podcast: Once Upon A Gene
Autor:Effie Parks
Análisis del Episodio
Resumen
Parents of a child with the ultra-rare CLCN6 gene mutation share their journey, advocacy work, and advice for other families.
Participantes (3)
- Effie Parks
- Cristin Purdy
- Paul Purdy
Escuchar Episodio
Descripción del Episodio
Links & Resources: Follow Their Journey on Social Media Facebook: Paxtons Pioneers Instagram: Paxtons_Pioneers KCAL News Story Watch the in-depth feature on their family’s advocacy here: KCAL …
Episodios Relacionados
-
Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn junio 5, 2025
-
From Beast Games Champ to Rare Disease Warrior: Jeff Allen’s 365-Mile Ruck for His Son’s Creatine Transporter Deficiency mayo 15, 2025
-
GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman mayo 1, 2025
-
Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman abril 18, 2025
-
Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter. marzo 27, 2025