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Driving Genetic ALS and FTD Activism with Daniel Barvin End the Legacy Foundation
Manage episode 419528644 series 2949198
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Daniel Barvin, Founder of the End the Legacy Foundation, is also the VP of Operations and Patient Advocacy at Coya Therapeutics. Coming from a family with a genetic predisposition to develop ALS, Daniel has brought together a community of activists who are intent on educating doctors and patients about early diagnosis and testing. This organization is also raising awareness about the need for more research and funding to cure genetic ALS and FTD.
Coya Therapeutics is developing diagnostics and treatments for genetic ALS and FTD, and Daniel is bringing the voices of the patients and family members to the table.
We talk about:
- Why there is a need for another ALS organization
- How the End the Legacy Foundation is using social media to build awareness and supporters
- The Genetic ALS and FTD Community Summit
- Building partnerships with researchers, industry and government
- Implications for families with inherited diseases
#EndtheLegacy #ALS #GeneticALS #ALSandFTD #GeneticDiseases #RareDiseases #Activism #InheritedDiseases
Interview on EmpoweredPatientPodcast
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