We congratulate founding ETL member Mindy Uhrlaub on being awarded by ALS-TDI at their summit today. Consider joining the session online at 3pm Eastern visit here to see the ceremony : fundraise.als.net/alssummit/ Congrats Mindy!

Bringing our community together is a major focus of End The Legacy. This email came from an attendee of our September Pacific summit and they okayed sharing it. It is overlayed with photos from our 3 in person summits. News on our 2026 North American summit will be coming soon!

Losing loved ones to ALS and FTD and being at risk for the same is not all our community of people impacted by genetic or inherited ALS and FTD have to endure. Some are comfortable putting down people in our position. We are standing together to say, let's find another way.

We are so proud to announce our 2026 3rd Annual Genetic ALS & FTD Community Summit will be held September 24th to the 26th in sunny Sacramento California! We are so pleased that ALS Network ALS Network will be our local host for the event!

We are re-sharing Michael's story of at risk care. We believe all who desire it should have the same chance to start therapies and get affairs in order when their function is moe firmly preserved. We thank him for sharing his story. See more here endthelegacy.org/care

My story isn't glamorous or unique, but let it be known I didn't bury my head in the sand. I left pieces of myself all over this country in an effort to advance science. I am proud to stand with my friends EndTheLegacy!

It's Official - MGH in Boston has joined the ranks of those embracing at risk care. We cheer them and all our recognized at risk care centers! See more at EndtheLegacy.org/care #Atrisk #geneticals #c9rof72 #sod1

We so appreciate Drs Amador, Gao and Thompson for giving their time for these talks and all their work to better understand the diseases that haunt out community. See them at endthelegacy.org/webinars

Check out this story in Biospace profiling End the Legacy co-founder and current Coya team member Daniel Barvin. We celebrate his commitment to ending the legacies of our families! biospace.com/drug-developme… #endthelegacy #c9orf72 #coya

For people faced with the risk of inherited terminal conditions it's compelling to think of the promise of gene therapies. Sadly we cannot promise they are coming until they are here. To live with risk and in our current reality visit endthelegacy.org/care