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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 will gather in Chicago with local host the Les Turner ALS Foundation.  Join us June 7th - 9th! 

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Program Highlights



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. 

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Panel Discussion

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


Logistic Details 

The Summit will begin Friday afternoon June 7th at 2pm and conclude Sunday June 9th at 12pm sharp. The gathering will be in Chicago with local host the Les Turner ALS Foundation based at Northwestern. 

Meals will be provided for attendees beginning with Friday Dinner. 

A Nominal 40$ registration fee is required. 

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