Genetic ALS & FTD:
End the Legacy
“End the Legacy was born through the efforts and vision of dozens of people impacted by genetic ALS and FTD who collectively saw the need for our community's voice to be heard.”
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.
Our beginning: “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 held the first of its kind “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.
Read the paper, “Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD” that came out of this meeting.
More meetings have now taken place over the past few years with the next workshop taking place in May 2026. Members of End the Legacy have presented their work both nationally and internationally.
They also recognize clinical centers that meet certain criteria and who welcome the at risk community to receive monitoring and clinical visits. We are pleased to note that an at risk clinic has been developed at Temple Hospital.
