iiinova — where your digital self keeps evolving

end-the-legacy.bsky.social @end-the-legacy.bsky.social · 07/05/2026

New Study In France! See details and more at www.endthelegacy.org/recruiting-stu… L’étude NeuroPrems suit l’évolution de différents marqueurs biologiques et neurologiques avant l’apparition de symptômes, afin de mieux comprendre les phases présymptomatiques des maladies sla / ftd.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 01/05/2026

The latest in our Community Science Liaisons' series breaking down science for the impacted community debuted yesterday and we are highlighting it for you here. Watch the short video or read the blog post here: www.endthelegacy.org/search-for-a-s… .

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 30/04/2026

Are you attending the AFTD Education Event in Seattle today or tomorrow? Catch up with the co-founder of our movement and leader of NorthStar ALS Dr. Nadia Sethi, as she shares information on End the Legacy and things of interest for those impacted by by inherited ALS and FTD. We appreciate Nadia!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 29/04/2026

Throw Back Wednesday! We are looking back to fall 2023 for the momentous occasion of the first workshop ever to contemplate the health needs of those at risk of genetic ALS and FTD. And we cheer ALS Hope Foundation for hosting.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 24/04/2026

Questions about Genetic Testing or Counselling in the context of ALS and FTD? Join us for a short presentation from the amazing Shannon Terek, MS, CGC who will then allow time for Q & A. linktr.ee/end_the_legacy

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 23/04/2026

Thanks to all in our community who participated in our at risk care survey, which ended last night. Now our survey committee will review the results before preparing them for sharing. Thanks to Jary, Daniel and Mindy for sharing this important task! #endthelegacy

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 22/04/2026

We are so thankful to the San Francisco Board of Supervisors and especially Supervisor Wong who endorsed our sincere thanks to the UCSF ALS Clinic and its dedicated head Dr Lomen-Hoerth who embraced our request to be certified as an at risk care center for those impacted by genetic ALS and FTD!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 20/04/2026

As medical care for disease onset for those impacted by genetic ALS and FTD is mainstreamed our community needs to have a voice in what matters to us. Please fill out this survey if you are over 18 and at risk for genetic or inherited ALS or FTD. www.surveymonkey.com/r/atrisksurvey

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 07/04/2026

Genetic Protections could get a big boost for those living in California as the state Assembly debates AB 1798. Two committees are hearing the bill soon. Written testimony will be accepted until Weds April 8th. Read more and act at endthelegacy.org/latestnews #endthelegacy #genetics

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 03/04/2026

We are coming back together in April on Tuesday the 14th at 7pm UK time and if you are impacted by inherited ALS (MND) and FTD in Europe or surrounding areas we invite you to attend and learn how we can work together to support each other.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 31/03/2026

Registration for our North American Genetic ALS & FTD is now open! After wonderful times together as a community in Chicago and Philadelphia we are so glad to be convening in sunny Sacramento California with friends and local host ALS Network. www.endthelegacy.org/communitysummi…

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 27/03/2026

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

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 25/03/2026

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 23/03/2026

If you are at risk for Genetic ALS you should be aware that there is evidence excessive Selenium leads to an rise in risk for ALS in a general population cohort. The amounts found in normal diet are not a worry, but supplemental amounts as advertised in this electrolyte drink, should be avoided.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 19/03/2026

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 18/03/2026

People impacted by inherited ALS or FTD consider building a family, or not, the same as anyone. This deeply personal and private contemplation may have some additional considerations when one is aware they are impacted by inherited ALS or FTD. www.endthelegacy.org/family-plannin…

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 17/03/2026

We want to turn your attention to this passionate opinion article in Stat News from End the Legacy co-founder Mindy Uhrlaub. Read the article here: www.statnews.com/2026/03/16/genetic… and see more about Mindy's writing here: www.mindyuhrlaub.com

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 16/03/2026

The genetic contribution to ALS and FTD are a minority of cases. The academies studying these diseases have historically not intuited those at genetic risk as unique disease stakeholders. Great strides have been made with the genetic community getting organized, but more work is to be done.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 12/03/2026

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

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 09/03/2026

A broad coalition of ALS organizations has united to send a joint message to our federal representatives - make sure ALS research is taken care of in the 2027 budget. See more at www.endthelegacy.org/latestnews and easily contact your legislators at democracy.io

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 06/03/2026

With at risk care centers opening up, and further care workshops planned, we individuals at risk should have a say in what our community priorities are. Nothing about us without us! The survey will open for responses on Thursday March 19th. See more at endthelegacy.org/atriskcaresurvey .

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 05/03/2026

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 03/03/2026

At Genetic ALS & FTD: End the Legacy a driving need since our founding was to be the place our parents and ourselves needed to turn to for community, connection and support. Visit www.endthelegacy.org/support to connect and share with others who need community.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 27/02/2026

An important part of our mission as Genetic ALS & FTD: End the Legacy is to fight for the interests of our community as advocates. In the United States ensuring the ALL ALS / Prevent ALS natural history study remains funded is a key priority. To be a part of this movement join our email list!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 25/02/2026

We hosted a fascinating talk on the cutting edge of biological marker development in ALS and related neurodegenerative diseases by Professor Jenna Gregory in late 2025. The recording with translated subtitles is now available. endthelegacy.org/webinars

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 23/02/2026

We are dedicated to bringing up to date science and trial information to the genetic community, but we know all impacted by ALS have similar needs. So we are thrilled our friend and ETL board member Nadia Sethi and colleagues have launched NorthStar ALS. Check them out at northstarals.org!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 20/02/2026

The Search for A Self Cure explainer series from our Community Science Liaison Dr Yentli Soto Albrecht has a new chapter today with a fascinating interview with Dr Phil Wong of Johns Hopkins Read the blog post and see the video at www.endthelegacy.org/search-for-a-s…

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 14/02/2026

Happy Valentine’s Day to all! But especially to anyone who has taken the pain and trauma of being in an inherited ALS and FTD family and turned into into determination to stop the disease via research participation!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 11/02/2026

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 10/02/2026

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. Learn about this movement and support it at www.pushupsforals.org

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 05/02/2026

We are so excited to announce the addition of the amazing Emma Bouché to our leadership board! In her time as an End the Legacy volunteer Emma has spearheaded the establishment of our movement in her native France. See more about our leadership team here www.endthelegacy.org/about-us

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 03/02/2026

If you are gene negative and want to act as a control you can reach the ALL ALS study in the US at 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 www.endthelegacy.org/recruiting-stu… #c9orf72 #EndtheLegacy

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 30/01/2026

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 publuu.com/flip-book/121892/2332553… and more info about at risk care at www.endthelegacy.org/care .

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 26/01/2026

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 : 📩 info@endthelegacy.org

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 20/01/2026

We are so excited to share the start of something special -"Search For a Self Cure". See more and find the first video update here www.endthelegacy.org/search-for-a-s… .

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 14/01/2026

This is tomorrow Thursday at 6pm UK Time! If you are impacted by inherited ALS or FTD , speak english, and are in Europe this forum is for you!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 13/01/2026

We are so appreciative of the leadership of Dr Walter Koroshetz in guiding the National Institutes of Neurological Disorders and Stroke and it's work in ALS and FTD with determination and compassion. We are very concerned with the sudden and seemingly political removal of his contract.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 08/01/2026

We have a new program - small group genetic counselling education! Join us for a presentation from Shannon Terek, MS, CGC who will then allow Q & A on Monday January 26th . www.endthelegacy.org/event-details/…

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 31/12/2025

We mourn those we’ve lost and those left behind. We care for those suffering with manifest disease or caring for those so afflicted. We are thankful for the functional and productive health most people at risk have lived with in 2025 and hope the same for 2026 for as many of us as possible.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 19/12/2025

We must sadly interrupt the Holiday Social feed with a reminder that anyone impacted by rare, adult onset genetic diseases must ever by watchful for the ugly face of eugenics to appear. All humans should be judged by their aptitudes and their achievements and not by details of their genetic code.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 18/12/2025

As we all are grateful for loved ones this holiday season, let us join in our feelings of gratitude to our community in ensuring the work of this patient driven organization continues in 2026. I If you would like to keep it going even stronger the appeal is still open here:https://loom.ly/NnM5-g8

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 17/12/2025

We are proud to offer a simple space for those impacted by genetic or inherited als or ftd to be in community with other peers with no agenda, to be with others who just get it. The last meeting of the year is today at 3pm Pacific. Register here forms.gle/hwHWQKdvGYVCu7ds7

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 11/12/2025

The fear of genetic discrimination impacts anyone faced with the choice of pursuing genetic treatments, and the impact of this fear is not the provision or denial of niche insurance products, but the pursuit or denial of genetic medicine approaches to terrible and sometimes terminal diseases.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 10/12/2025

If you are at risk for genetic ALS or FTD - researchers would love for you to sign up for studies that seek to understand what is happening in your body, and how it may relate to the development (or not) of ALS or FTD in the future.See studies here:https://www.endthelegacy.org/recruiting-studies

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 08/12/2025

Just checking in with those at great risk of developing ALS on a regular basis would result in an earlier diagnosis of ALS for the 10-15% of cases in those families. Learn what you can do about your risk today at endthelegacy.org/care .

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 07/12/2025

End the Legacy Board Member Nadia Sethi has taken her long stewardship of patient communications with the ALS community to a new organization North Star ALS. Check them out at tonight’s poster session if you are in San Diego!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 05/12/2025

Attending the premier scientific ALS meeting of the year? Consider chatting with any of those in this photo who have had their life touched by genetic or inherited ALS and FTD. Here is to a great conference and much progress towards a cure!

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 05/12/2025

Save the date! In the new year we are gathering anyone impacted by inherited or genetic ALS / MND and FTD from the United Kingdom, Ireland or other English Speakers in Europe. Join us for a community forum facilitated by UK ETL volunteers.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 04/12/2025

Help bring attention to this injustice for her and the other Sod1 patients in Norway by sharing her story and emailing their minister for health Jan Christian Vestre at postmottak@hod.dep.no asking for their help in ensuring her neurons can be saved before it is too late.

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end-the-legacy.bsky.social @end-the-legacy.bsky.social · 02/12/2025

Today is Giving Tuesday. Think about what it would be like to have nowhere to turn for information, support and recognition in a Genetic ALS family. That was what each of ours had to endure before End the Legacy. Join our generous match to keep our movement going! givebutter.com/GcP5ep

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