Muscular Dystrophy Association

✨Rare Disease Day is February 28. All month long, MDA is elevating powerful community stories that show how connection, research, and advocacy are fueling progress for people living with neuromuscular diseases. These voices remind us that no one faces a rare disease alone. 👉 Meet the people behind the progress: https://lnkd.in/gX6bK55j #RareDiseaseDay #RareDisease #Community #NeuromuscularDisease #MuscularDystrophy #MDA

🚗✨ Driving can be more than getting from point A to point B. For people living with neuromuscular diseases, it can open the door to independence, opportunity, and confidence. Hear from occupational therapist Chad Strowmatt and college student AJ Johnson about the challenges, lessons learned, and the power of self advocacy along the way. ♿🚦 👉 Read more: https://lnkd.in/gpwGHTts #Driving #AdaptiveDriving #Neuromuscular #MuscularDystrophy #MDA #QuestBlog

Join us Friday, January 30, 2026 from 3:00–6:30 PM EST for Spotlight On: Friedreich’s Ataxia (FA) This engaging virtual learning program features expert insights from: - David Lynch, MD, PhD – Children's Hospital of Philadelphia - Shana McCormack, MD, MTR – Children's Hospital of Philadelphia - Forum Kamdar, MD, PhD – University of Minnesota Department of Medicine 🗣️ Plus a powerful community voice panel We’ll cover: - The latest updates in FA research & care - Endocrine health in FA - Cardiac considerations in FA - Live Q&A with each presenter 🎟️ Register for FREE today: 👉 https://lnkd.in/gzQgHD2K Special thanks to our program supporter: Biogen #FriedreichsAtaxia #RareDisease #MDA

Researchers at Biogen are leading a new Phase 3 clinical study evaluating salanersen as a potential treatment for presymptomatic newborns with spinal muscular atrophy (SMA). This research is exploring whether starting therapy before symptoms appear can help prevent SMA or reduce its severity 👶🧬 Learn who may be eligible, what participation involves, and how this study could shape the future of SMA care. 🔗 https://lnkd.in/gSBT4E3a #SMA #SpinalMuscularAtrophy #NewbornHealth #ClinicalTrials #MDA #QuestBlog

🚨 Breaking news! 🚨 This evening, the House of Representatives passed legislation providing strong funding for medical research at the National Institutes of Health (NIH), a key priority for the neuromuscular disease community. 💙💛💪 The bill also reauthorizes the Rare Pediatric Disease Priority Review Voucher program and passes the Accelerating Kids Access to Care Act —legislation critical to the health and well-being of children with neuromuscular diseases. Next step: The bill now moves to the Senate for consideration next week.🏛️ ➡️ We encourage everyone to contact their Senators to urge them to support the bill by visiting: https://lnkd.in/gg2_riYT

Mayo Clinic’s Tania Gendron, PhD, shares why the sessions and networking at the 2026 #MDAconference are essential for scientists and clinicians to attend to accelerate breakthroughs for the #neuromuscular community. 📅 March 8–11, 2026 | Orlando, FL Register today: https://lnkd.in/gyW3ZFpq

Neuromuscular disease breakthroughs don’t happen by accident, they happen because we invest in medical research. NIH-funded research makes those breakthroughs possible. 🔬🌟 Congress is making critical decisions right now about 2026 funding levels, and they have until Jan. 30 to pass a budget. Our voices can work to ensure that research for the neuromuscular and rare disease community remains a top priority. Join me and take action now at https://mda.org/supportNIH #NIH #Advocacy #SupportNIH #MDA

📣 Upcoming Industry Update Webinar "Now Approved: A New Therapy for Adult and Pediatric Patients With SMA" 🗓️ Thursday January 29 ⏰ 1:00 pm EST ⌛ 45 minutes 👉 Register here https://lnkd.in/gmKNSeBF This webinar is sponsored by Novartis. #SMA #SpinalMuscularAtrophy #MDA

🎉✨ MDA proudly announces Lily Sander as the 2026 National Ambassador, continuing her incredible advocacy, leadership, and impact after landmark years of service. Living with Charcot Marie Tooth disease, Lily has become a powerful national voice for access, research, and independence. This year, she kicks off her second year by speaking at the 2026 MDA Clinical & Scientific Conference and presenting the Donavon Decker Community Impact in Research Award. 🏆 From Capitol Hill to national stages, Lily is helping move progress forward for people living with neuromuscular disease every day 🏛️💪 👏 We also extend our deepest gratitude to Ira Walker as he concludes an impactful two year term as our amazing MDA National Ambassador. ➡️ Read more: https://lnkd.in/gBiba-Y9 #MDAambassador #MDA #ForwardTogether

MDA Ambassador Nora Ramirez is sharing how NIH funding powers the breakthroughs that change lives. Don't let progress stall. Help Nora and MDA Advocates nationwide secure the future of neuromuscular research. 🔬🌟 Take one minute to make an impact with Nora today: MDA.org/supportNIH ✍️ #NIH #Advocacy #SupportNIH #MDA