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Muscular Dystrophy Association

@mda.org

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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Latest posts by Muscular Dystrophy Association @mda.org

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When the next 75 years start with the impact you’ve already made πŸ™

Families got answers. Kids built independence. Caregivers felt supported. Research & advocacy moved forward.

We can’t thank you enough.

πŸ’™πŸ’› #ForwardTogether #MDA75

29.10.2025 19:00 πŸ‘ 2 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Inspired by his uncle and cousin who lived with muscular dystrophy, Zack has volunteered at MDA Summer Camp for the last 14 years.

He says the community gives him strength, but it’s his commitment that makes us stronger. Thank you, Zack!

πŸ’™πŸ’› #ForwardTogether #MDA75 #MDAVolunteer

16.10.2025 14:00 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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The 2026 #MDAconference agenda is LIVE! 🧬Join global leaders in #neuromuscular research, care & advocacy March 8-11 in Orlando FL. View tracks, speakers & sessions: www.mda.org/press-releas...

#NeuromuscularResearch #GeneticMedicine #RareDisease #ClinicalCare

15.10.2025 13:00 πŸ‘ 2 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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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 β€” it changes lives.

πŸ’™πŸ’› #ForwardTogether #MDA75

02.10.2025 00:00 πŸ‘ 1 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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πŸ’ͺ β€œBeing strong is showing up and giving my allβ€”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: www.mda.org/Strong
What makes you strong? mda.org/MDAstrong

25.08.2025 13:30 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Muscular Dystrophy Association and Parent Project Muscular Dystrophy Announce Joint Consensus Guidelines for Safe and Equitable Delivery of Gene Therapy in Duchenne Muscular Dystrophy | Muscular Dystr... Guidelines to standardize care, enhance safety monitoring, and promote equitable access to transformative treatments. New York, Saturday, August 23, 2025 β€” The Muscular Dystrophy Association (MDA) and...

BREAKING NEWS: MDA and Parent Project Muscular Dystrophy have published new Consensus Guidelines to help standardize #GeneTherapy delivery for #Duchenne #MuscularDystrophy.

Read the release ➑️ www.mda.org/press-releas...

23.08.2025 22:37 πŸ‘ 7 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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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. 🌍🧬

πŸ”— Register now: www.mdaconference.org

#MDA #MuscularDystrophy #neuromuscular

21.08.2025 17:46 πŸ‘ 1 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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Muscular Dystrophy Association Statement to our Community | Muscular Dystrophy Association New York – Friday, July 18, 2025 – We are heartbroken by the recent loss of an MDA community member in a gene therapy trial for limb-girdle muscular dystrophy (LGMD). Our deepest condolences go out to...

MDA Statement to our Community: www.mda.org/press-releas...

18.07.2025 20:32 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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How do you raise the standard of care? You make it law.

Thanks to the MD-Care Act, more people with neuromuscular disease now have access to the care they need.

Join us in making an impact: MDA75.org.β€―πŸ’™πŸ’›

#MDA75 #MuscularDystrophy #ALS #Neuromuscular

14.07.2025 22:08 πŸ‘ 2 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Dr. Jeni Stepanek calls herself a welcome mat.

But not because she is walked on - because she invites others in and celebrates their stories. Stories defined by purpose and potential.

Watch her story and share yours at #75YearsStrong!

πŸ’™πŸ’›

#MDA75
#MuscularDystrophy #Neuromuscular

10.07.2025 14:09 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

We’ll cover:

➑️ What’s in the final bill
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➑️ What it means for Medicaid
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➑️ What comes next for our community
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Register: mdausa.webex.com/weblink/regi...

09.07.2025 18:00 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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We are proud of what MDA advocates have accomplished over the past six months. We know many in our community are feeling anxious or uncertain about what comes next. Join us July 15 @ 7PM ET for a special MDA Advocacy Institute: Medicaid and the Path Forward.

09.07.2025 18:00 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0
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Congress has passed legislation that makes historic cuts to #Medicaid, #Medicare, and #ACA, & it could leave 17M more uninsured, including those w/ #neuromuscular diseases.

#MDA is disappointed, and we pledge to defend our community.

Read the full statement: www.mda.org/press-releas...

03.07.2025 19:06 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Today, the U.S. Senate passed a bill making devastating cuts to Medicaid & other health programs that the #neuromuscular community relies on to build healthy lives & independence.

Urge the House to reject this bill & its cuts NOW!

Read #MDA's statement: www.mda.org/press-releas...

01.07.2025 20:13 πŸ‘ 1 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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🚨 NEW: MDA + FARA are co-funding a $300K research grant to study cardiac fibrosis in Friedreich’s ataxia (FA), a key cause of heart failure in FA. This study could lead to life-changing therapies.

πŸ”— www.mda.org/press-releas...

#FriedreichsAtaxia #CardiacResearch #FAresearch #Neuromuscular

30.06.2025 15:57 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

Read the letter: d3dkdvqff0zqx.cloudfront.net/groups/mda/a...

16.06.2025 22:50 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Today, MDA & 41 neuromuscular disease organizations sent a letter to the U.S. Senate leadership rejecting cuts to #Medicaid and affordable health insurance coverage/services used by the #neuromuscular community - raising costs, imposing red tape, and delaying care.

16.06.2025 22:50 πŸ‘ 7 πŸ” 2 πŸ’¬ 1 πŸ“Œ 1
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In 1986, Dr. Lou Kunkel cracked the genetic code of dystrophin, the gene behind Duchenne and Becker muscular dystrophies. This breakthrough paved the way for lifesaving treatments and gene therapies that are transforming lives today. πŸ’›πŸ’™

Donate today: MDA75.org

12.06.2025 15:04 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Sometimes, going the distance for others starts by going the distance yourself. Literally. See how disability advocate & travel blogger Cory Lee helps others see the worldβ€”and share your own story at #75YearsStrong!
πŸ’™πŸ’›
#75YearsStrong #MDA75 #MuscularDystrophy #Neuromuscular #Travel #Adventure

04.06.2025 18:56 πŸ‘ 3 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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πŸ“Ί One nation, one mission. In 1971, the first national MDA Telethon hit the airwavesβ€”bringing America together to fight neuromuscular disease. Millions watched, donated, and changed lives.

πŸ’™ Be part of the next historic moment. Donate today: MDA75.org πŸ’›

#MDA75 #ALS #MuscularDystrophy

14.05.2025 19:32 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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ALS influencer Brooke Eby’s perspective? You can endure anything if you make it funny. See how she’s tackling ALS and share your own story! πŸ’™πŸ’›

#MDA75 #EndALSwithMDA #EndALS #ALS #MuscularDystrophy #Neuromuscular #ALSawarenessMonth #75YearsStrong

09.05.2025 14:50 πŸ‘ 3 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Every kid deserves a summer of fun. In 1955, we launched #MDA Summer Camp,a place where kids with neuromuscular disease could experience friendship, adventure, and freedom without limits. 75 years later, the magic continues. Help make summers more unforgettable. Donate today: MDA75.org

30.04.2025 13:44 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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🌟 Not even muscular dystrophy could stop country musician Bradley Walker from becoming a star. Watch his story of hope and share yours at #75YearsStrong. πŸ’™πŸ’› #75YearsStrong #MDA75 #MuscularDystrophy #ALS #Neuromuscular

03.04.2025 21:09 πŸ‘ 4 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Summer fun can change the world. Just ask #MDA Camp Counselor Devin Jensen. His work with campers living with neuromuscular disease has changed their lives β€”and changed his too.

Watch his story and share yours! πŸ’™πŸ’›

#75YearsStrong #MDA75 #SummerCamp #MuscularDystrophy #Neuromuscular

20.03.2025 13:20 πŸ‘ 2 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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In 1953, the first MDA Care Centers openedβ€”transforming life with neuromuscular disease forever. Today, our impact spans 150+ centers nationwideβ€”helping families every day. Be part of the next breakthrough.

Donate today: MDA75.org πŸ’™πŸ’› #HealthcareHeroes #MDA75 #ALS #MuscularDystrophy

12.03.2025 21:40 πŸ‘ 5 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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When hope wasn't enough, they took action. In just two months, these unstoppable families changed the future of #neuromuscular disease forever. The first breakthrough in our 75-year journey that defined MDA.

Donate now at MDA75.org. πŸ’™πŸ’›

#MDA75 #ALS #MuscularDystrophy

12.02.2025 14:39 πŸ‘ 2 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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75 years of hope, progress, & action πŸ’™πŸ’› #MDA’s new PSA, Legacy. Impact. Momentum., celebrates the families, researchers, clinicians, advocates, volunteers, donors, & partners who’ve shaped the fight against #neuromuscular disease.

πŸŽ₯ Watch the PSA: www.mda.org/press-releas...

MDA75.org #MDA75

28.01.2025 14:19 πŸ‘ 4 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0