Our Story

Genetic ALS & FTD: End the Legacy grew from the vision and efforts of dozens of people and families affected by genetic ALS and FTD who saw the need for stronger connection, support, and community representation.

Since forming in 2020, ETL has worked to elevate community perspectives and expand support, education, research, and advocacy. Our work is made possible by volunteers who contribute their time, experience, and expertise. We welcome others who would like to get involved!