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

UPCOMING: End The Legacy 2026 North American Summit

In partnership with local host ALS Network, End the Legacy is gathering for their 3rd annual End the Legacy Genetic ALS & FTD Community Summit in Sacramento CA Septemeber 24th – 26th.

Registration is now open and will be capped at 100 impacted participants.

2026 North American Summit

Register now

PAST: 2026 Penn FTD Center Annual Familial Conference

This annual virtual conference designed for individuals and families affected by or at risk for genetic FTD/ALS, with expert talks and live Q&A.

Recordings of past conferences are available.

Penn FTD Center Annual Familial Conference

Register now

End the Legacy Genetic ALS / FTD Research Education Series

Watch webinars here

WATCH WEBINARS

Opportunities

End the Legacy At Risk Care Survey

End the Legacy is seeking input from people who are impacted by inherited or genetic ALS and/or FTD through an anonymous research survey.

As understanding grows around the potential value of medical monitoring for people at genetic risk of ALS or FTD, End the Legacy developed the At‑Risk Care Survey to ensure community voices help inform ongoing discussions about this topic. The survey was planned throughout 2025 with community feedback and reviewed by an Institutional Review Board (IRB), which deemed it exempt due to low risk.

Who can participate

  • Anyone who is at risk for inherited or genetic ALS or FTD
  • The survey is anonymous
  • Available in English only

Timeline

  • The survey is open until April 22

🔗 Take the survey:
https://www.surveymonkey.com/r/atrisksurvey 

To learn more about the concept of at‑risk care, visit:
https://endthelegacy.org/Care

Please note: This survey is conducted by End the Legacy and is shared here for awareness. ALS Canada is not involved in the administration of the survey.

Next section: Gene Hub Resources

Research opportunitiesGene Hub Resources