Muscular Dystrophy Association
@MDAorg
MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
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Caregivers face growing challenges as support systems fall behind. MDA is advocating for solutions, and we need your input. 🏛️✨ 🗣️ Share your caregiving experiences: votervoice.net/MDA/Surveys/13… #Caregiving #MDA #Advocacy #DisabilityPolicy
Yesterday, Solid Biosciences shared an important update with the Friedreich’s ataxia community. The first participant has been dosed in the Phase 1b FALCON trial evaluating SGT-212, our novel, investigational dual-route administration gene therapy for the treatment of FA. We are…
solidbio.com
Letter to the FA Community - Solid Biosciences
Dear Friedreich’s ataxia (FA) community, As we begin the new year, we want to wish you and your families a happy and healthy 2026 and thank the FA community for your trust and partnership. We are...
The Muscular Dystrophy Association has opened applications for its 2026 college scholarship program for students with neuromuscular disease. musculardystrophynews.com/news/applicati… #musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
You may know me from Grey’s Anatomy as Joe the bartender — or from appearances on Modern Family, You, Chicago Fire, or some other appearance. I would like to share something important with you about my life and my career. 🧵👇
Amyotrophic lateral sclerosis is a progressive neurodegenerative disease. Here's what you need to know about ALS, from risk factors to new treatments, medications, and clinical trials. health.usnews.com/conditions/bra…
A historic year. Real progress. A community moving #ForwardTogether 💙💛 In her first End of Year message, MDA President & CEO Sharon Hesterlee, PhD reflects on MDA’s 75th anniversary and how 2025 set the stage for what’s next. Read more: mdaquest.org/a-year-built-t… #MDA75
Cutting NIH funding stalls life-changing progress. As Congress debates NIH and medical research, remind them who they fight for—families like Katie’s. Take action with MDA Ambassador Katie Brooks. Join us: #SupportNIH 👉 mda.org/supportNIH
🎥 From Sharon Hesterlee, PhD: Don’t miss your final chance to join the global #neuromuscular research community at the 2026 #MDAconference, March 8–11 in Orlando! ⏰ Early-bird registration closes December 31 — secure your spot now ➡️ MDAconference.org #RareDisease
Duchenne’s addition to the Recommended Uniform Screening Panel is a defining moment for the community and a major step forward for newborn screening nationwide. 💙💛💪 👉 mda.org/press-releases… #Duchenne #NewbornScreening
Health care affordability is top of mind for many in the neuromuscular community. Join us 12/17 at 7 PM ET for #MDA #Advocacy Institute: Access to Care Affordability for proposed policy updates, Congressional activities & more. 👉 Register: mdausa.webex.com/weblink/regist…
#FDA approves @Amgen's UPLIZNA for adults with #gMG—offering more treatment options and potential long-term control with just 2 doses a year. 🙌 #MDA honors everyone who made this possible and remains committed to care and research. 💙💛💪 More: mda.org/uplizna
We announced positive topline results from our Phase 1/2 DELIVER trial of z-rostudirsen in DMD: REC met its primary endpoint & maintained a favorable safety profile. Read more: bit.ly/3Yku2Sx
Big news for the spinal muscular atrophy (SMA) community! The FDA has approved @Novartis' Itvisma — a new treatment option for everyone ages 2+ living with SMA. A major step forward for families. 💙💛💪 👉 mda.org/press-releases… #SMA #GeneTherapy #MDA #Neuromuscular
Proud to be chosen by @NFL players for #MyCauseMyCleats and grateful for their support of our mission to empower people living with #MuscularDystrophy, #ALS, and other #neuromuscular conditions. 💙💛💪 Learn more: mda.org/press-releases… #MDA75 #ForwardTogether #MDAstrong 🏈
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