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If you are gene negative and want to act as a control you can reach the ALL ALS study in the US at https://www.all-als.org/ if you are at risk and don't know your status , or you know you are positive see studies recruiting here https://www.endthelegacy.org/recruiting-studies
#c9orf72 #EndtheLegacy
February 3, 2026 at 1:59 PM
end-the-legacy.bsky.social
End the Legacy will be sharing important information about the Genetic ALS & FTD community in upcoming winter ALS meetings. Come say hi if you are attending! #EndTheLegacy #NothingAboutUsWithoutUS
November 18, 2025 at 12:56 PM
end-the-legacy.bsky.social
The holiday season can remind us all of those we have lost, and when the same terrible disease has taken many it's presence in their absence is palpable. Our monthly peer support hour is this Wednesday and our community team meets twice a month. #endthelegacy #atrisk #als #ftd
November 17, 2025 at 12:18 PM
end-the-legacy.bsky.social


We look forward to seeing continuing investigations as to what causes this difference in impact. See more at endthelegacy.org/c9orf72info

#endthelegacy #c9orf72
October 30, 2025 at 12:21 PM
end-the-legacy.bsky.social
Check out this story in Biospace profiling End the Legacy co-founder and current Coya team member Daniel Barvin.
https://www.biospace.com/drug-development/coya-exec-daniel-barvin-is-on-a-mission-to-end-genetic-als-and-ftd

#endthelegacy #c9orf72 #coya
October 28, 2025 at 6:03 PM
end-the-legacy.bsky.social
As promised we are closing our #NealsMtg 2025 report out with this post. We will tempt you to a click by sharing one item from our final 3 updates.
To see the full lists (they are interesting!) click through to https://www.endthelegacy.org/neals-report-2025
#EndtheLegacy #AtRisk #ftd
October 17, 2025 at 11:03 AM
end-the-legacy.bsky.social
As promised , linked is our written report for the Genetic ALS and FTD community from NEALS 2024. We will be providing 4 sections with the first debuting today. To read the analysis along with the list visit: https://www.endthelegacy.org/neals-report-2025 #endthelegacy #c9orf72 #sod1 #nealsmtg
October 14, 2025 at 11:41 AM
end-the-legacy.bsky.social
We are still buzzing from the amazing experience of the 2025 NEALS annual conference. Cheers to that organization and all it's members and staff for a great event and so much excellent work to report on for the year. #Nealsmtg #EndtheLegacy
October 13, 2025 at 11:51 AM
end-the-legacy.bsky.social
The webinar from MND researchers originally scheduled for this Wednesday, has been moved to the following day Thursday October 16th at 9:30am US Pacific. https://www.endthelegacy.org/event-details/an-update-on-genetic-mnd-als-research-at-the-university-of-oxford

#c9orf72 #EndtheLegacy
October 11, 2025 at 5:25 PM
end-the-legacy.bsky.social
We are proud to announce our first Community Science Liaison Fellow is the amazing Yentli Soto Albrecht, PhD. Congratulations Dr. Soto Albrecht!

See more here: https://www.endthelegacy.org/communitysciencefellowship

#EndtheLegacy #c9orf72 #research #geneticALS
October 7, 2025 at 12:15 PM
end-the-legacy.bsky.social
We are thrilled to announce two new clinics have been appointed as recognized Centers of Care for those at risk of Genetic ALS and FTD!
Information on the centers can be found on our website: https://www.EndtheLegacy.org/care

#EndtheLegacy #GeneticALS #GeneticFTD #C9orf72
October 6, 2025 at 12:06 PM
end-the-legacy.bsky.social
Connect with us at #NealsMtg ! We are thrilled to be joining the NEALS meeting once again in person this coming week. For anyone impacted by ALS virtual registration is free. Cheers to NEALS for such an open policy. See more at https://meeting.neals.org/ . #EndtheLegacy #NEALS
October 3, 2025 at 12:26 PM
end-the-legacy.bsky.social
Le Dr Maria del Mar Amador est neurologue au Centre SLA de Paris des hôpitaux universitaires de la Pitié-Salpêtrière à Paris.
https://www.endthelegacy.org/event-details/une-presentation-du-dr-maria-del-mar-amador-pour-la-communaute-genetique-de-la-sla #endthelegacy #sla #c9orf72 #sod1
October 2, 2025 at 11:12 AM
end-the-legacy.bsky.social
Nous avons le plaisir de vous annoncer que notre première réunion en français aura lieu le jeudi 25 septembre à 18h, heure de Paris.

Si vous souhaitez pouvoir vous connecter, il faut adresser un mail avec votre demande au : [email protected]

#c9orf72 #sod1 #endthelegacy #als #ftd #sla

September 16, 2025 at 9:51 PM
end-the-legacy.bsky.social
We have been busy this summer of 2025! Read about it here endthelegacy.org/newsletters - including that our Pacific Region Summit is starting in a few hours - cheers to our volunteer planning committee! #c9orf72 #s0d1 #grn #fus #EndtheLegacy

September 5, 2025 at 5:41 PM
end-the-legacy.bsky.social
Our Genetic Counselling Education Program is going strong! If you are impacted by genetic or inherited ALS or FTD you can get a free educational session about the topic of Genetic Testing and Counselling with a certified Genetic Counselor! Sign up here:https://loom.ly/zVe-79I #endthelegacy
August 25, 2025 at 4:31 PM
end-the-legacy.bsky.social
Tomorrow in our community team meeting our policy advisor will provide a training for our members on being a forceful constituent advocate. If you are impacted by genetic ALS or FTD and want to join our community meeting list email [email protected] to step up like Bill! #endthelegacy
August 20, 2025 at 5:09 PM
end-the-legacy.bsky.social
We are proud to share our co-founder and current Executive Director Jean Swidler was able to work on this recently accepted article on C9orf72 prevention trials. Cheers to the authors and funders.
#EndTheLegacy #c9orf72 #prevention
https://doi.org/10.1093/brain/awaf290
August 6, 2025 at 8:53 PM
burningiceberg.bsky.social
How many generations do we need to expose to ALS causing situations. Military service members are 6-25x’s more likely to develop ALS in their lifetime. #EndTheLegacy #StopWarMongering #FindTheCure #PeacefulProtest
June 14, 2025 at 7:44 PM
end-the-legacy.bsky.social
Cheers to the organizers and all who participated. The next day we were proud to partner with ALS Network for visits to the CA Senate delegation. We must have our communities voice heard wherever it needs to be! #GeneticALS #GeneticFTD #ALS #FTD #C9orf72 #SOD1 #GRN #EndtheLegacy
Photo outside Senator Schiff's office with a staff person we met with. Photo outside Senator Padilla's office after meeting with a staff person.
February 6, 2025 at 5:55 PM
end-the-legacy.bsky.social
Report from our own Cassandra Haddad on the first day of a packed week of international als meetings. #aworldwithoutals #alsmndsymp #montreal24 #endthelegacy
December 3, 2024 at 4:45 AM
end-the-legacy.bsky.social
But today, with leadership from End the Legacy this need is more recognized then ever. We host our volunteer-run peer support hour on the 3rd Wednesday of the month at 3pm Pacific time. To learn more or sign up , visit here:https://forms.gle/Dgg5VpfUdkARG7kh8 2#endthelegacy #als #ftd #mnd #genetics
November 19, 2024 at 5:43 PM
jeanc9orf72.bsky.social
#c9orf72 #genetics #als #ftd #sod1 #grn #mapt #endthelegacy
November 12, 2024 at 6:23 AM