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.

On January 12, 2023, End the Legacy introduced their organization and provided testimony to the FDA. At that presentation, there was a Patient Listening Session for the Pre-Diagnosis Genetic ALS and FTD community for more than 40 FDA staff members representing multiple centers. Eight speakers impacted by Genetic ALS and FTD genes presented their stories and generated interest during the session that continued by email over the next several days.  There was a repeat of the listening session recorded as a YouTube video available for public viewing.  Here is a link to a pdf of the session.

Jean Swidler

Over two days in September 2023, Dr. Michael Benetar and Dr. Terry Heiman-Patterson hosted a Workshop on Guidance for at Risk Genetic ALS and FTD hosted by the ALS Hope Foundation and End the Legacy. Guest speakers from across the country and around the globe came together to discuss genetics, epidemiology, and what it means to live "at risk." Every person in the room, from researchers to clinicians to carriers of the ALS/FTD genes was encouraged to express their opinions and views. The next step will be a white paper on the recommendations coming out of the meeting.

As we grow our organization, we encourage you to contact us by email to learn more or become involved: geneticalsftd@gmail.com

We have recently launched a new website! Please visit https://www.endthelegacy.org/ to learn more.