Advocacy

There is Power in a United Voice

End the Legacy Advocacy

We advocate for the needs and priorities of people and families affected by genetic risk for ALS and FTD. By bringing community perspectives to researchers, policymakers, regulators, and other decision-makers, we work to ensure that our community is heard.

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2023 FDA Listening Session with the Genetic ALS & FTD Community

On January 12, 2023, eight community members representing four ALS- and FTD-associated genes shared their experiences and priorities with more than 40 FDA staff members.

Bringing Community Perspectives to the Table

Participating in conversations that shape research, care, and policy.

Advocating on Policy Issues

Supporting policies that respond to our community’s needs and priorities.

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Sharing our Stories

Helping the experiences and perspectives of our community be seen and understood.