Advocacy

There is Power in a United Voice

End The Legacy Advocacy

We are proud to put forward the voice of the genetic ALS and FTD community as one that is unique with needs and interests that deserve to be heard. We will no longer be silent and allow our health to be considered an afterthought.

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2023 FDA Listening Session for the Pre-Diagnosis Genetic ALS & FTD Community

8 people representing 4 FTD and ALS genes Presented to over 40 FDA staffers on January 12 2023.

Ensuring our Community is Heard when our disease are discussed

Taking our Seat at the Table

Speaking Up on Important Policy Issues

Policy Efforts

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Making Our Stories Known

Sharing our Stories