End The Legacy's Genetic ALS & FTD Community Summit 2024
For the first time our community of dedicated team members, those impacted who are curious and others affected by genetic ALS & FTD gathered in Chicago with local host the Les Turner ALS Foundation, June 7th - 9th 2024. It was a great event! Over 40 impacted individuals attended, with 65 total attendees.
Program Highlights
Connection
At this event you will have the chance to meet and connect with dozens of others impacted by Genetic ALS & FTD. We know through smaller meetups (like this photo of team members from an NIH meeting in 2023) that time together is so valuable.
NEALS Training
Top research clinicians will instruct attendees in the NEALS Clinical Research Learning Institute Curriculum, which will connote the title of "NEALS Research Ambassador" upon completion.
Skill Building
Three panels will teach skills directly needed for a strong genetic ALS & FTD patient advocacy movement.
Friday: Lessons from Other Patient Movements in Diseases with Presymptomatic Phases
Saturday: How to Talk with Family About Shared Risks and Research Opportunities.
Sunday: How to Share Your Genetic ALS & FTD Story With Different Audiences.
Event Flier with Speakers
