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A patient led organization dedicated to the needs and interests of the Genetic ALS & FTD community. 


New Developments + New Momentum = New Initiatives

Creating Community for the genetic ALS & FTD Community

Founded in 2023, please join us and support our effort to provide us and our families the best shot at a long, healthy life possible. 


Making a Difference

The road to curing genetic ALS and FTD lies in research. At Genetic ALS & FTD: End the Legacy we work to match members of our community to research studies and educate on the importance of participation. We also seek to ensure questions of interest to our community are answered in efforts led by us in patient led research. 

Modern Architecture

Genetic ALS & FTD: End the Legacy is dedicated to ensuring our community has accessible up to date information on issues important to us.  

Online Meeting

Genetic ALS & FTD: End the Legacy members know the importance of being able to connect with others impacted by these inherited diseases. We strive to ensure no one will ever have to feel alone in facing these risks again through robust support resources.  

Support Groups

For too long the perspective of those impacted by genetic ALS and FTD were not understood to be unique and needed. As End the Legacy we ensure our community's voice is no longer hidden in discussions with researchers, industry, and government. 

Young Activist


The Genetic ALS & FTD community is large and growing. ALS & FTD are terminal conditions, and being at a heightened risk for them can have profound impacts on people and families. We organized Genetic ALS & FTD: End the Legacy to provide educational and support resources to, encourage and promote research about, and advocate for the Genetic ALS & FTD community.

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