Genetic ALS & FTD: End the Legacy

Giving Tuesday is less than a week away! This giving season, every dollar you donate to End the Legacy will be DOUBLED. That means your gift will go twice as far in pushing the interests of those at great genetic risk of ALS and FTD. Our small organization with an outsize impact needs your support! https://lnkd.in/gU5J-PZ2

The 2024 ALS MND Symposium and affiliated meetings are coming up soon! These meetings highlight the shared pursuit of breakthroughs in ALS research, care, and community. Throughout Genetic ALS & FTD: End the Legacy staff and leadership will bring the inherited ALS and FTD perspective to multiple sessions. Come hear us speak or message to chat in person during the week! Many thanks to the organizers, funders, and all who come from far and wide to participate. #alsmndsymp #als #ftd #c9orf72 #sod1 #grn

It is a momentous day. Previously, the only advice regarding one's own personal health in relation to being at genetic risk was that there was "nothing to be done." Today, with the groundbreaking release of the review article "Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD" there is now established advice that people in our position, should we desire it, to engage in preventive monitoring. Such a clinical relationship would have shaved years off the diagnostic delay for our loved ones who have or have died of ALS and FTD. We cheer the brilliant researchers who spearheaded this effort, Dr. Terry Heiman-Patterson and Dr Michael Benatar. We celebrate our team of advocates who, in our efforts, made the conditions the need for this unmistakable. We congratulate the members of our team who participated in the workshop from which the review appeared. And we greatly appreciate all who authored the review and participated in and funded the workshop. Stay tuned for further education and information on this effort! Read it here! https://lnkd.in/g_Vbmq-d We are proud to share your support of End the Legacy allowed us to ensure this article was Open Acccess. #endthelegacy #als #ftd #c9orf72 #grn #mapt #sod1 #tardbp #patientsincluded

Meet the inspiring women shaping the future of patient advocacy?at?#WorldOrphanUSA 2025! ???? We’re honored to welcome speakers from organizations dedicated to empowering patients and driving transformative change in the rare disease community, including: ? Jean S., Executive Director, Genetic ALS & FTD: End the Legacy ? Sophia Zilber ??,?Board Member, Patient Registry Director,?Cure Mito Foundation ? Mackenzie Abramson, MPH,?Patient Advocate and Sr. Manager of Research Program Communications,?Global Genes ? Heidi Edwards, President, Sisters' Hope Foundation ? Allison Peck, CFO, Cure VCP Disease ? Annette Bakker, President, Children's Tumor Foundation ? Sonia Gobeil,?Co-Founder,?Ataxia of Charlevoix-Saguenay Foundation ? Pangkong Fox,?Science Engagement Director,?CACNA1A Foundation Hear their powerful stories, innovative strategies, and insights on improving patient care, access, and empowerment on the World Orphan Drug Congress USA stage April 22-24. Together, we’ll explore how to amplify patient voices and address unmet needs across the globe. ?? ?? Join us in making a difference –?register now and be part of the movement. ? ?????? ????% ?????? ?????????????? ???????????? ?????? ??????????-???????? ???????? ?????????????? ???? ???????? ???? ??????????: https://lnkd.in/eaz-cxwZ ? ???????? ???????????? ?????? ?????????????? ???????????????????? & ?????????????????? ????????: https://lnkd.in/ezqcD2G4 ??? Interested in sharing you story or expertise? ?????????????? ???? ?????????? ??????????: https://lnkd.in/ev8pfujX #RareDisease #OrphanDrugs #PatientCare #PatientAdvocacy

Did you know the need for people at great risk of inherited ALS and FTD to be able to connect with others in that position was clear from the time that such knowledge could be discerned by those at risk? In many of our families that would have been in our parents or grandparents generations decades ago. But today, with leadership from End the Legacy this need is more recognized then ever. We host our volunteer-run peer support hour on the 3rd Wednesday of the month at 3pm Pacific time. To learn more or sign up , visit here:https://lnkd.in/gTsQETDm

Cheers to End the Legacy advisor and @CureMAPTFTD Co-Founder Linde as she prepares to speak at a UCSF Grand Rounds today, Monday, November 18th. A shoutout to UCSF for featuring such an important voice for an often overlooked community. Register for the 10 am Pacific event here: https://t.co/xjSOMRxk82 #ftd #mapt #curemaptftd

Today, we celebrate the profession that touches so many of us deeply - Genetic Counselor Awareness Day 2024! These dedicated professionals ensure our families can be guided properly through the contemplation of their own genetics. Meeting with a Genetic Counselor is an important, and we feel mandatory, step when anyone pursues genetic testing for ALS and FTD related genes. Cheers to these amazing people and their profession! #genetics #als #ftd

We cheer reporter Kristen Brown of The Atlantic for an insightful look at the issue of genetic non-discrimination protections. We especially appreciate End the Legacy founding member and dedicated leader Bill, who shares his personal experience in the piece. https://loom.ly/G7Mbxb8 #genetics #ALS #FTD

Did you know that since the #c9orf72 expansion's discovery as a major driver of inherited #ALS and #FTD, no one bothered ever to condense the voluminous literature on the gene into something a layperson could easily wrap their hands around? To address this, we have produced a genetic information guide doing just that! Read it here ; https://lnkd.in/g9Q--sXw

Save the date! The second annual End the Legacy Genetic ALS & FTD Community Summit will be held in Philadelphia, PA Friday, June 6 - Sunday June 8th 2025! More details to come. With local hosts The ALS Hope Foundation!