EndTheLegacy

Patient led organization providing education and support , and advocating for, those impacted by Genetic ALS and FTD.

[EndTheLegacy @End_The_Legacy]

And that is a wrap on the 2nd Annual End the Legacy Genetic ALS & FTD Community Summit. Over 70 people personally impacted by genetic ALS and FTD and dozens of friends and allies depart with a determination to be a part of ending the legacies that haunt our families.

[EndTheLegacy @End_The_Legacy]

Our families deserve accuracy and dignityespecially when public attention turns toward us. The only way to push back against harmful narratives is to build the community infrastructure our families urgently need. Join our work: [email protected] 3/3

[EndTheLegacy @End_The_Legacy]

On June 11, The New Yorker and @addiegoss published a story involving a person with a C9orf72 expansion. For families living with inherited ALS and FTD risk, the piece raised urgent concerns about how genetic risk is described to the public. 1/3

[EndTheLegacy @End_The_Legacy]

A study of people with C9orf72-associated bvFTD should not be casually generalized to all C9orf72 expansion carriers. Not all carriers develop bvFTD, and for families living with this risk, imprecise public language can deepen stigma, fear, and genetic determinism. 2/3

[EndTheLegacy @End_The_Legacy]

...we are proud to supply community leaders to take part. We thank them! If you want to involved in this movement, join us by emailing [email protected]

[EndTheLegacy @End_The_Legacy]

End the Legacy is proud to have started the call for the rational incorporation of one's risk of inherited ALS or FTD into their medical care as desired. As this common sense proposition is given airings in academic discourse around the world ...

[EndTheLegacy @End_The_Legacy]

[email protected] to share your perspective as soon as possible! Share and encourage others to as well! #TeamScience #GeneticALS #C9orf72 #Sod1 3/3

[EndTheLegacy @End_The_Legacy]

Congress is currently debating the Act for ALS Reauthorization. As it is heard in the Senate's HELP committee this coming week we need to make sure committee staff understand the importance of natural history studies like ALL ALS and Prevent ALS to our communities. 1/3

[EndTheLegacy @End_The_Legacy]

Under the language currently considered there is no provision for funding these groundbreaking studies. If natural history studies are added as a grantable research endeavor under Section 2 of the bill this would be solved. Email [email protected] and 2/3

[EndTheLegacy @End_The_Legacy]

And we cheer ALS Hope Foundation @ALSHF for hosting. Without our community coming together our health would never have been addressed. Join us at End The Legacy to keep our needs on the front burner!

[EndTheLegacy @End_The_Legacy]

We are looking back to Fall 2023 for the occasion of the first workshop ever to contemplate the health needs of those at risk of genetic ALS and FTD. Gathering experts from around the world a great exchange was held which led to the first guidance for our community...1/2

[EndTheLegacy @End_The_Legacy]

which can be seen at https://t.co/hdiRimm4QM . Again under the oversight of Drs. Terry Heiman-Patterson and Michael Benatar a great group of experts will be meeting to refine this advice. End the Legacy is so proud to participate and to sponsor this occasion. 2/3

[Mindy Uhrlaub @MindyUhrlaub]

Just got featured in my local magazine!
https://t.co/6UCI0xU9rf
@End_The_Legacy
@youralsnetwork
@ALSTDI
@LesTurnerALS

[EndTheLegacy @End_The_Legacy]

It's really that simple.

[Mindy Uhrlaub @MindyUhrlaub]

Science is sexy, especially when you talk genes, art, and activism. #UCSFmemoryandagingcenter #ALSawareness @End_The_Legacy @ALSTDI @youralsnetwork @LesTurnerALS

[EndTheLegacy @End_The_Legacy]

The Search for A Self Cure series from our Community Science Liaison Dr. Albrecht has a new chapter today with Dr. Phil Wong of Johns Hopkins talking biological markers, potential therapies and the importance of your samples. https://t.co/KjwbqGJ8ds #c9orf72 #Endthelegacy

[Yentli Soto Albrecht @YentliSA]

I held my dad as he died of a genetic cause of ALS I had inherited from him. I’m staring down this disease in my future with the tools to fight it with science, medicine & advocacy 👩🏻‍🔬👩🏻‍⚕️📣. #mdphdtobe in #searchforaselfcure to @End_The_Legacy

[EndTheLegacy @End_The_Legacy]

she is celebrating the life and passions of her late father and raising needed funds for Genetic ALS / FTD Research. Learn about this movement and support it at https://t.co/FaoyEqCTth #endthelegacy #c9orf72 #geneticALS #geneticFTD #pushupsforals #pushups 2/2

[EndTheLegacy @End_The_Legacy]

After the tragic loss of her father to C9orf72 ALS in 2024, MD-PhD Candidate Dr Yentli Soto Albrecht has moved to help end the legacy of C9 in her family. While continuing to pursue her training and serving as our first Community Science Liaison ... 1/2

[EndTheLegacy @End_The_Legacy]

If you are looking for exciting news about ALS care and research may we suggest you check out the 2025 report from the Mass General Healy ALS Center? Read their report at https://t.co/n7lPV53XTI and more info about at risk care at https://t.co/hdiRimlx1e .

[EndTheLegacy @End_The_Legacy]

Ces espaces de parole sont conçus comme des moments bienveillants, confidentiels et ouverts, pour échanger et partager des vécus.

N’hésitez pas à relayer cette information autour de vous.

#EndTheLegacy #SLA #MaladieDeCharcot #DFT #Communauté #Partage #Génétique 3/3

[EndTheLegacy @End_The_Legacy]

Partage d’expériences autour des formes génétiques de la SLA (maladie de Charcot) et de la DFT – End the Legacy France
📅 Prochaine session : demain (mardi) à 19h30
📅 Dernière session : mardi 3 février à 19h30
👉 Pour vous inscrire ou en savoir plus:
📩 [email protected] 1/3

[EndTheLegacy @End_The_Legacy]

La communauté End the Legacy France organise des sessions de partage d’expériences pour les personnes concernées, directement ou indirectement, par les formes génétiques de la SLA (également appelée maladie de Charcot) et de la DFT. 2/3