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Taking our Seat at the Table

For too long conversations about ALS or FTD did not have anyone who had the genetic ALS and FTD community as their priority at the table - with the founding of End the Legacy we are ensuring that doesn't happen again. 

NIH ALS Strategic Plan

Jean Swidler was an appointed working group co-chair of the NIH ALS Strategic Plan which operated from 2021-2022


Karen, Cooper, and Jean have been appointed patient advisors to the Accelerating Medicine Partnership a joint project of the private sector, the FNIH and the NIH.

National Academies of Science and Engineering and Medicine

Mindy Uhrlaub was appointed a committee member for the Making ALS Livable committee of the National Academy of Science, Engineering, and Medicine.


Linde Jacobs was appointed to the Patient Advisory Board of the ALLFTD Study.

Patient Advisory Boards

Many End the Legacy members participate in various Patient Advisory Boards.

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