Organizations & groups

End The Legacy

End The Legacy is a nonprofit organization dedicated to supporting and advocating for their community. Operating under the ALS Hope Foundation umbrella, these organizations together will develop educational programs about familial ALS and FTD, establish support groups for members of the familial ALS and FTD community, engage the medical community to establish guidelines for care of asymptomatic gene carriers, and advocate for the hundreds of thousands of people at higher risk for developing ALS or FTD through the inheritance of a genetic variant that runs in their family.

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End the Legacy campaign logo

I AM ALS Familial ALS Team

I AM ALS Familial ALS Team aims to raise awareness of familial ALS/FTD and engage, empower, and support the familial ALS community and advocate for them with ALS/FTD researchers and funders.

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Familial ALS Team logo

Webinars, conferences & events

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

June 6th-8th, 2025 in Philadelphia, PA, USA.

What to Expect: Joining dozens of other impacted individuals in person to engage in these challenging and personal topics can be transformative. We have talks lined up on mental health for those at risk, new clinical guidance for our community, how to impact policy to benefit us, and more. Speakers already secured include clinicians, genetic counselors, researchers, and dedicated patient advocates.

Register and more information here

Register here

End the Legacy Genetic ALS / FTD Research Education Series

Watch webinars here

WATCH WEBINARS

PAST: 2025 Penn FTD Center Annual Familial Conference

Familial Conference: Uncovering the Genetics of FTD/ALS (VIRTUAL CONFERENCE)

Recordings of past conferences are available.

Penn FTD Center Annual Familial Conference

Watch past recordings.

Next section: Gene Hub Resources

Research opportunitiesGene Hub Resources