We are so excited to open registration to our summit next week and debut some of the amazing talks and speakers we have lined up. And we are excited that ALS Network is helping be our local host. #EndtheLegacy #GeneticALS #GeneticFTD #c9orf72 #sod1 #fus
We are coming together in Sacramento in March, following other summits in North America in 2024 and 2025. We hope you consider joining us September 24th - 26th in Sacramento CA with local host ALS Network. Registration opening later this month. #EndtheLegacy #c9orf72 #grn #fus #sod1 #tardpb #mapt
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
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
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
We look forward to seeing continuing investigations as to what causes this difference in impact. See more at endthelegacy.org/c9orf72info
#endthelegacy #c9orf72
Check out this story in Biospace profiling End the Legacy co-founder and current Coya team member Daniel Barvin.
www.biospace.com/drug-development/coya-ex...
#endthelegacy #c9orf72 #coya
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
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
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
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. www.endthelegacy.org/event-details/an-update-...
#c9orf72 #EndtheLegacy
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
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
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
Le Dr Maria del Mar Amador est neurologue au Centre SLA de Paris des hôpitaux universitaires de la Pitié-Salpêtrière à Paris.
www.endthelegacy.org/event-details/une-presen... #endthelegacy #sla #c9orf72 #sod1
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 : info@endthelegacy.org
#c9orf72 #sod1 #endthelegacy #als #ftd #sla
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
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
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 info@endthelegacy.org to step up like Bill! #endthelegacy
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
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
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.
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
Report from our own Cassandra Haddad on the first day of a packed week of international als meetings. #aworldwithoutals #alsmndsymp #montreal24 #endthelegacy
