Driving Genetic ALS and FTD Activism with Daniel Barvin End the Legacy Foundation

Digital Politics with Karen Jagoda

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5M ago 18:45

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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

EndtheLegacy.org

CoyaTherapeutics.com

Interview on EmpoweredPatientPodcast

Transcript of Coya Therapeutics interview

108 episodes

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