end-the-legacy.bsky.social
@end-the-legacy.bsky.social
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 18h
Join us Oct 15th 5:30pm UK time time for an update from researchers at the University of Oxford on new developments of interest to the genetic MND community. Register here: https://www.endthelegacy.org/event-details/an-update-on-genetic-mnd-als-research-at-the-university-of-oxford
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 1d
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
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 2d
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
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 5d
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
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 6d
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
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 15d
The most common dementia - Alzheimer's - has a mild stage centered on patients reporting to medical attention due to issues with their memory. FTD onset prevents the patient from doing the same, and it is assumed they would not seek medical attention. Biomarkers are needed!
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 16d
Today is the start of world FTD Awareness Week. Frontotemporal Dementia covers different subtypes of the disease that include Behavioral Variant FTD where marked behavioral changes are the most prominent early symptom, and aphasic types where the ability to process communication is interrupted.
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 21d
With our new Community Science Liaison Fellowship we will support a developing researcher who is late in training or early in their career with an annual stipend to enable participation in and travel to conferences. Learn more and apply here: https://www.endthelegacy.org/communitysciencefellowship
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 22d
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

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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · 23d
We congratulate Mindy Uhrlaub for award from ALS-TDI. Consider joining her to celebrate this achievement:
“ I'm so honored to be receiving this award from ALS TDI and I hope you'll join me at the White Coat Affair on October 18th in Boston! Details and tickets can be found at www.als.net.”
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Sep 7
That's a wrap on our inaugural Pacific Region Genetic MND and FTD Community Summit! Over two dozen people gathered in this event planned in a few short months. Where ever the genetic community exists we will work to provide spaces like this so that no one must ever feel alone, or sidelined!
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Sep 5
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

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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 27
Sometimes it helps to connect with people that just get it. We host a peer support hour with no agenda, just the ability to connect. If you are impacted in anyway by genetic or inherited ALS or FTD and would like to join the conversation sign up here: https://forms.gle/BfzbiLMiB47GETce8
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 25
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
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 20
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
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 20
Yesterday Genetic ALS and FTD community advocate and End the Legacy member Bill spoke on the need for greater Genetic Discrimination protections at the Next Gen DX summit mainstage. We appreciate the summit featuring this important issue and cheer Bill for his commitment to our community!
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 18
The ALS and FTD fields and those running trials must heed the growing consensus that presymptomatic C9orf72 expansion carriers can be included under certain biological readings in trials where the main test is in symptomatic patients. Learn more https://www.endthelegacy.org/latestnews #c9orf72
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 15
We appreciate Target ALS for acknowledging the effect our organization has had. To keep this work up we need your support! Join our community team , spread the word, or donate to the mission today. https://www.endthelegacy.org/get-involved
end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 14
Today we are celebrating our co-founder and Genetic ALS champion Daniel Barvin for being designated an "ALS Hero" by the largest ALS organization in the United States, the ALS Association. From the entire Genetic ALS and FTD Community we cheer you Daniel! #C9orf72 #ALShero #Leadership
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 9
It's open access though now only as the PDF.
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Aug 6
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
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Apr 1
...when we are born with the variants. Many new sites across the United States and Puerto Rico are now open for the Prevent ALS arm of the ALL ALS study. Everything ALS has a new remote study for those at risk. See those studies and more at our website: www.endthelegacy.org/recruiting-s...
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Apr 1
For those of us in families impacted by inherited ALS or FTD one of the best ways for us to contribute to helping cure these diseases is to participate in at risk research. Our samples may hold clues that will unlock mysteries on how these diseases develop after long fulfilling lives ...
Image asking those at risk to consider participating in research.
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Feb 6
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.
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end-the-legacy.bsky.social
end-the-legacy.bsky.social @end-the-legacy.bsky.social · Feb 6
We were proud to send our own Jean S. to Capitol Hill first for the collaborative and unifying More Than Our Stories ALS Advocacy event where dozens of individuals and groups impacted by ALS strategized together on US federal priorities for the disease and those impacted by it.
Group photo from MTOS gathering with Senator Murkowski visiting.
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