Muscular Dystrophy Association
@MDAorg
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Following
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MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Nationwide
Joined June 2009
We join our colleagues at the @FSHDSociety & the neuromuscular community in mourning the loss of Daniel Perez, co-founder of the FSHD Society. His vision & determination created a powerful movement that has driven research forward & united countless families living with FSHD.
It is with great sadness that we share the passing of Daniel Perez, co-founder of the FSHD Society. Dan was a true pioneer and activist. Dan’s impact cannot be overstated. Our thoughts are with his family, friends, and all who were touched by his extraordinary life.
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This year, thousands of families found answers, care & hope because of you. From research to camp memories, your support goes beyond numbers — it changes lives. 💙💛 #ForwardTogether #MDA75
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Excited to welcome Dr. Sharon Hesterlee from @MDAorg as a session chair at TREAT-NMD Conference 2026! She’ll lead a key session on Patient Involvement in Clinical Trials this Feb in Lisbon 🇵🇹 🔗 Register now: https://t.co/gXFzhB7mKe
#RareDisease #ClinicalTrials #Neuromuscular
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Every breakthrough starts with research, and research starts with funding. Join w/ #MDAstrong to protect NIH funding for #neuromuscular research. Tell Congress: No cuts to #NIH! Head to https://t.co/3aKmsIusVQ today! #RareDisease #ALS #MuscularDystrophy
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Through a joint effort of clinicians, researchers, and advocacy leaders, the @MDAorg and @ParentProjectMD announced the publication of new guidelines that promote the delivery and monitoring of gene therapy 🧬 in patients with DMD. Read more:
neurologylive.com
New guidelines enhance gene therapy delivery for Duchenne muscular dystrophy, emphasizing multidisciplinary care and safety monitoring for optimal patient outcomes.
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Join us 9/16 @ 7PM ET for our next #MDA #Advocacy Institute: Support for Medical Research Funding. Learn how you can protect & support the NIH funding that helps create breakthroughs and life-changing therapies for the #neuromuscular community. https://t.co/vGh7i8ViaD
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September 11 is a reminder of what fire fighters give in service to others. We honor those who died so others could live, and those we continue to lose to 9/11-related illness, by carrying their memory forward – today and every day.
On this day, we honor the lives lost on Sept. 11, 2001 – and pay tribute to the fire fighters and first responders who made the ultimate sacrifice in service to others. We will never forget.
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Asked what strong means. I said “mental and emotional.” Dad heard “push-ups.” 🙄 Donate $35.75+ to @MDAorg, snag the tee, and support people living with ALS and other neuromuscular diseases. Use my link to donate https://t.co/cSkF6ctzOU Link in bio. #Ad #MDAstrong #MDA75 #MDA
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(3/3) 🚒 More than 360 Fill the Boot events are happening nationwide this #LDW. Can’t make it in person? You can donate online today at https://t.co/YD2z9abOGO. #FillTheBoot #LaborDay #MDA
filltheboot.donordrive.com
Event landing page for 2025 IAFF Fill the Boot
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(2/3) The historic #FillTheBoot campaign fuels breakthroughs, with 25+ treatments approved for #neuromuscular diseases and more on the way! 💙💛💪
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(1/3) 🔥If you see a #FireFighter holding a boot in your community this #LaborDayWeekend, drop in what you can to support #MDA and our 71-year partnership with @IAFFofficial.
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We announced data from our positive Phase 3 trial in generalized #MyastheniaGravis (#gMG). Our research efforts underscore the potential of our pioneering approach using siRNA, which may offer a new type of treatment option for those suffering with this disease.
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(2/2) 📺 WATCH: KSDK St. Louis, https://t.co/HK4GrWaTsn + 5PLUS app 💸 DONATE: Text “Donate” to (314) 425-5355 or: https://t.co/Pf7sWqM3Bw #ShowOfStrength #StLouis #MDA75 #MDAstrong
mda.donordrive.com
Event landing page for 2025 Mike Bush Show of Strength
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(1/2) 📅 Mark your calendars! Join us Sunday, Aug 31 • 8–10 p.m. CT for the @ksdknews Show of Strength, LIVE from @GrantsFarm — hosted by @mikebushksdk. An inspiring night of stories, local heroes & hope 💙💛 All to benefit families with neuromuscular diseases via @MDAorg.
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💪 “Being strong is showing up and giving my all—even when I face challenges.” – Brayden, MDA Ambassador This Sept, discover what it means to be #MDAstrong. Donate $35.75+ & get our 75th anniversary tee: https://t.co/4S80sJ4Kj6 What makes you strong? https://t.co/n4phl1lwt7
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BREAKING NEWS: @MDAorg and @ParentProjectMD have published Consensus Guidelines for safe, equitable delivery of #GeneTherapy in #Duchenne #MuscularDystrophy Read more ⬇️ https://t.co/RDO0Wi66mX
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🚨 Registration is OPEN! 🚨 Join us March 8–11, 2026 in Orlando for the #MDAConference, the leading global event for neuromuscular care & research. 🌍🧬 🔗 Register now: https://t.co/rY71BiEuzS
#MDAconference #MDA #neuromuscular
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1/2 HHS & HRSA are considering adding #Duchenne muscular dystrophy to the #newbornscreening panel. Submit your comment by Sept. 15 to support early diagnosis & care. Helpful tips, easy form & more: https://t.co/VEJhhYxi3O
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Today we announced that the @US_FDA has granted Breakthrough Therapy Designation to DYNE-251 for the treatment of patients with DMD amenable to exon 51 skipping. Read here: https://t.co/gK5XmBGvPP
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