EndTheLegacy
@End_The_Legacy
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Patient led organization providing education and support , and advocating for, those impacted by Genetic ALS and FTD.
Joined January 2023
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.
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We must ensure informed, capable community minded advocates are present whenever our diseases are being discussed. Cheers to the authors and funders.
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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. #EndTheLegacy #c9orf72 #prevention .
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We thank Jeff for speaking at our June Summit and sharing his story publicly. This is instructive for the attitude of regulators towards interventions for terrible diseases such as ALS. #endthelegacy #silenceALS.
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We appreciate Stat News and reporter Jason Mast for reporting on the inspiring story of Jeff Vierstra who received a compassionate use ASO intervention at an early sign of impending muscle weakness and is still symptom free years later.
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Cheers to planning committee member Sharon, a Melbourne local, for scouting this location! #geneticMND #geneticALS #GeneticFTD #EndtheLegacy #RacingforMNDi.
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We are excited to share our inaugural Pacific Region community summit for those impacted inherited MND or FTD is going to be held at the wonderful Docklands "Library at the Dock" in Melbourne on Saturday September 6th! .Learn more :
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While these organizations normally advocate for ALS focused efforts, this FTD study encompesses a large cohort of individuals at genetic risk of ALS and FTD and holds promise for research breakthroughs for both diseases. #EndtheLegacy #Sciencematters.
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A coalition of ALS organizations wrote to the heads of the National Institute of Aging (NIA) and National Institute on Neurological Disorders and Stroke (NINDS) encouraging the renewal of the ALLFTD study.
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Elle sera programmée une fois que nous aurons constitué un groupe de participants intéressés. Que vous ayez ou non fait un test génétique, que vous soyez ou non à risque, vous avez toute votre place dans notre communauté et notre mouvement.
endthelegacy.org
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Lors de cette réunion (en français), nous vous présenterons les dernières avancées, recueillerons vos idées, et partagerons les façons concrètes de vous impliquer.Envoyez un e-mail à info@endthelegacy.org si vous souhaitez participer à la réunion.
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We are proud to have a French meeting! .Grâce à ce travail collectif, de nouvelles recommandations simples ont vu le jour pour mieux surveiller sa santé avant l’apparition des premiers symptômes. Nous développons également des ressources pensées par et pour notre communauté.
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Cheers to our local partner the Racing for MNDi foundation and their founder Assunta as well as local impacted committee members Sharon and Paige for planning this unique event! .Sign up here: .
givebutter.com
By ALS Hope Foundation
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For a small 25$ US / 40 AUS registration fee you receive full summit access , lunch, and for a limited time up to 450 AUS in travel reimbursement after attending for all those impacted in anyway by inherited or genetic MND.
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We are thrilled to share sign up for our Pacific Region Genetic MND and FTD Community Summit is now open! The summit will be held in Melbourne from 10:30am- 3:30pm on Saturday September 6th. Hear from genetic counselors, neurologists and scientists and other impacted individuals.
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The final agenda is being finalized but this one day event will feature community building, peer support, research updates and more. The science that needs our impacted community voice is global, so our patient advocacy movement must be as well! #endthelegacy #racingformndi.
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We are proud to share the genetic community will be gathering in Melbourne on Saturday September 6th with local organization host the Racing For MND i Foundation and a planning committee of those impacted by genetic MND / FTD in Australia.
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As the world celebrated Global ALS / MND awareness day this weekend End the Legacy advocates were proud to finalize plans to continue building a global movement for those at risk of and otherwise impacted by genetic ALS / MND and FTD.
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RT @uniQure_NV: uniQure is proud to support the @End_the_Legacy conference! Join us to learn about the latest in genetic ALS and our commit….
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