End the Legacy's 2025 Genetic ALS & FTD Community Summit

We Came Together in 2025!

Following the success of our first in-person summit last year, we came back together this time in Philadelphia PA with local host the ALS Hope Foundation. A powerful weekend of learning, community and connection was had.

June 6th - 8th 2025

Meeting Reprt

Over 70 committed individuals impacted by genetic ALS and FTD gathered in Conshohocken Pennsylvania outside Philadelphia in early June 2025. Joined by a few dozen allies ,together the summit heard from clinicians and researchers about promising new research, debated ethics with bio-ethicists, and importantly had time for community peer sharing. All sessions had an impacted individual speaking or facilitating from the front of the room. All weekend long attendees shared messages of hope and gratitude on a board in the meeting room.

Summit Program

Sponsors

We could only have this great event with the support of friends and allies. We thank our sponsors.

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