Genetic ALS & FTD: End the Legacy

ALS is a terminal illness marked by progressive paralysis. FTD is a terminal illness marked by progressive dementia. In a sizable minority of both diseases, the cause is genetic, and many of the genes implicated can cause either or both diseases. The C9orf72 Expansion is the most common genetic cause of both. In this circumstance, whole families are at risk. #ALS #FTD #EndTheLegacy

Our Genetic Research Education series is continuing with a new webinar focused on the gene that encodes TDP-43, TARDPB, on Thursday, September 12th, at 5:30 pm Eastern. This mutation can cause both ALS and FTD, and has a number of variants. Hear from Dr Neil Shneider of Columbia about what research is available for those with pathogenic variants both before and after symptoms arise and from people with the mutation who participate in research and how that fits into their lives. There will be ample time for Q&A as well. Register and learn more here: https://loom.ly/ZQtUzy8 #EndTheLegacy #SilenceALS #TARDPB #GeneticALS #FamilialALS #FTD #ALS

Did you know in many families impacted by inherited ALS and FTD speaking about this "elephant" isn't always welcome among family members? So for those who do want to process being impacted, they may not be able to speak to anyone who just "gets it" very often or at all. We are so proud to offer a monthly Peer Support Hour where volunteer peer facilitators welcome anyone impacted by genetic or inherited ALS and FTD to connect and be in community with each other. This month, Carolyn from Southern California will our peer facilitator on Wednesday August 21st at 6pm Eastern Time. If you are impacted and would like to attend sign up here. https://lnkd.in/gQe_PEbP #EndTheLegacy #AtRiskALSFTD #Community #PeerSupport #InThisTogether #ALS #FTD #C9orf72 #SOD1 #GRN

Register for a great event where two prestigious authors will discuss a landmark paper on ALS Biomarkers with a great group of panelists, including ETL's own Jean Swidler. Academic and community interactions are a must and we cheer ALS One and NEALS for organizing! #ALS #ALSONE #NEALS #EndTheLegacy #Biomarkers https://t.co/NnMRpkJqnx

We are thrilled to share the news of a newly recruiting study for those at risk of Genetic ALS in a whole new region of the United States where no other study for this population has ever been established. At Barrow Neurological Institute in Arizona, the Prevent ALS arm of the ALL ALS study is now recruiting those at risk of genetic ALS! If you are interested in participating - which does not require knowing your status but does require knowing you are at risk - email fulton.research@dignityhealth.org to learn more. See this study and others on our page of currently recruiting studies in the United States https://loom.ly/GbDyUN0 . We are proud to have been the first to see the value in collating these studies so those interested can easily find them. #PreventALS #EndTheLegacy #SOD1 #C9orf72 #TARDPB #FUS #Genetics #ALS #MND

If you are in Northern California, there's still time to join us in Sacramento this Thursday at Sutter Health Park for the August 1st Giants Affiliated Rivercats minor-league baseball game. Use this link to sit with our crew and support our mission of serving the genetic ALS & FTD community! https://loom.ly/BZIVeXE #ALS #FTD #Genetics #MND #C9orf72 #SOD1 #GRN #TARDPB #FUS #EndTheLegacy

We are thankful for the leadership provided to our community of those impacted by inherited ALS and FTD and to all those impacted by ALS by Nadia. If you want to join her call to support our movement, donate here https://loom.ly/DvPTlA8 Nadia Sethi #EndTheLegacy #C9orf72 #SOD1 #GRN #TARDPB #FUS #MAPT #Genetics #AtRisk #Pevention #ALS #MND #FTD

End the Legacy cheers all research efforts that will help eradicate the diseases that haunt our families. One we especially are excited about is the study seeing the efficacy of Tofersen to prevent symptoms in certain SOD1 carriers with elevated biomarkers, known as the Atlas Study. We are excited to share the study needs just 25 more enrollees to have full enrollment! If a fast progressing SOD1 variant impacts you and are interested reach out to alsatlasstudy.com! To learn more browse the study website or watch our SOD1 genetic research education webinar from earlier this year https://loom.ly/vHg_xdI . In the picture attached ETL leader Cassandra is sharing about her positive experiences in SOD1 research! #ALS #SOD1 #Prevention #Genetics

We celebrate again dedicated End the Legacy leader Mindy Uhrlaub as she delivered a keynote address titled "Worrier to Warrior: How Community Engagement Gets Me Closer to a Cure" at today's National Institutes of Neurological Disorders and Stroke annual Non-Profit Forum. We cheer as well the organizers for putting individuals impacted front and center and acknowledging the momentum in our movement of those at risk for genetic ALS and FTD through this honor. #leadership #als #ftd #c9orf72 #genetics #EndTheLegacy

In June, in preparation for our first summit, ETL sat down over Zoom with noted patient advocate and Treatment Action Group Executive Director Mark Harrington to speak about the journey of HIV progress with biomarkers, early identification of patients, and ultimately treatment before symptoms as routine. Stay tuned for a longer panel discussion with Mark and others! https://lnkd.in/geh3_X9a #ALS #FTD #GeneticALS #HIV #PatientsIncluded #PatientAdvocate #Leadership