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Am I The Problem?: Stories from CZI's Rare As One Project
Manage episode 402457392 series 2987437
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The Chan Zuckerberg Initiative (CZI)'s Rare As One Network brings together rare disease patients and advocates in their quest for cures. Both of this week’s stories are from Rare As One grantees who are sharing their stories and experiences navigating diagnoses and organizing their communities to accelerate research, identify treatments, and change the course of their diseases.
Part 1: When Riley Blevins’ son gets diagnosed with a rare disease, it changes his life.
Part 2: Heidi Wallis becomes completely obsessed with trying to fix her daughter.
After spending years in the corporate world in media relations and corporate branding, a rare disease diagnosis for his first-born son changed -- and very well saved -- Riley Blevins' life. Today, he is the senior director of global community engagement of Cure HHT.
Heidi is the Executive Director of the Association for Creatine Deficiencies and parent of four children, two of which have GAMT Deficiency- a rare brain creatine deficiency syndrome. Prior to working for ACD she was as a grant analyst and project manager in the Utah Public Health Newborn Screening program and served as an ACD volunteer board member. Heidi's vision is that one day all creatine deficiencies will be diagnosed at birth, through routine newborn screening, and will be treated with an effective and appropriate treatment before the onset of symptoms.
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