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.