Muscular Dystrophy Association
Share
MDA is the #1 voluntary health organization in the US for people living with neuromuscular diseases.
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA’s mission is to empower the people we serve to live longer, more independent lives.
**MDA Social Media Community Guidelines**
At the Muscular Dystrophy Association (MDA), we’ve built our social media communities to connect, engage, and learn from one another. We welcome your participation and encourage open discussion about your experiences. When visiting, commenting, or posting on MDA’s social media channels, here are a few things to keep in mind:
Respectful and Meaningful Engagement
• We welcome your mentions, comments, messages, and replies. However, as a nonprofit focused on neuromuscular disease, we cannot provide medical advice or engage in discussions about specific treatment options.
• For guidance and support we direct any questions on autoreply messages to the MDA Resource Center to call 1-833-ASK-MDA1 (1-833-275-6321) or email [email protected].
• Social media accounts that MDA follows—or that follow us—do not imply our endorsement of those accounts or their content.
• The opinions and content shared by followers, including images and videos, do not necessarily reflect the views of MDA, its staff, or affiliates. Health and Medical Discussions
• Medical Advice: MDA’s social media channels are not a substitute for professional medical advice. If you have a medical question, please consult a healthcare provider.
• Treatment Discussions: If a comment or post includes specific details about a therapy, treatment, or clinical trial, MDA may refer the questions in the conversation to specialists in the MDA Resource Center: By Phone: 1-833-ASK-MDA1 (1-833-275-6321) By Email: [email protected]. Product and Safety Concerns
MDA is a nonprofit organization that supports research, care centers, and advocacy that contribute to drug development, but we are not biotechnology or pharmaceutical company. We care deeply about the safety and well-being of our community. If you have concerns about a medical product or therapy, we encourage you to speak with your doctor or a specialist in the MDA Resource Center for guidance. Community Conduct
To maintain a positive and inclusive space, MDA may remove content that includes:
• Profanity or hate speech – We aim to foster a respectful community.
• Off-topic or misleading information – We want to keep discussions relevant and factual.
• Spam or promotional content – This includes posts promoting the sale of products or services.
• Personally identifiable information – To protect privacy, we may remove posts that contain personal details like phone numbers, addresses, or medical information.
• Other objectionable content. Third-Party Links
Links to external websites or social media accounts shared in comments do not necessarily indicate MDA’s endorsement. We appreciate your support in making our social media communities a welcoming and valuable space for all. Thank you for engaging with us and for being part of the MDA community!
10/07/2026
⏰ Two weeks to go. Registration is still open!
On October 23–24 in Dallas, TX at the Renaissance Dallas Hotel, we will bring together individuals and families living with neuromuscular disease for a day of learning, connection, and support. Be sure to join us for an inspiring keynote address from Lily Sander, MDA National Ambassador.💙💛
Lily will give a candid keynote on the comfort of community, the reality of struggle, and the beauty of resilience. Together, we’ll set the tone for a day rooted in real connection and shared strength.
MDA Engage is a welcoming space to:
✅ Learn from trusted, expert speakers
✅ Ask questions and gain practical information
✅ Connect with others who truly understand your journey
Past attendees tell us they leave feeling more informed, more confident, and less alone. We would love to offer that same experience to you.
🔗 Register today: https://www.mda.org/care/community-ed/mda-engage/2026/mda-engage-dallas
Special thanks to our sponsors: Amgen, BridgeBio, Novartis, argenxglobal, Biogen, Catalyst Pharmaceuticals, Inc., Dyne Therapeutics, Entrada Therapeutics, Inc., Genentech, Sarepta Therapeutics, Scholar Rock, Upsher-Smith
Media Partners: Bionews, ALS News Today, Muscular Dystrophy News, Myasthenia Gravis News, SMA News Today
10/07/2026
📣 Community Industry Update Webinar
Join us for "Servier & Muscular Dystrophy: Partnering for Progress in Rare Diseases" on October 8 at 12pm ET. This is an upcoming webinar to get to know Servier Pharmaceuticals and learn more about its growing commitment to the muscular dystrophy community.
Following Servier’s acquisition of Edgewise Therapeutics’ muscular dystrophy programs, we’ll introduce Servier, explore its focus on addressing unmet needs in rare diseases, and look ahead to how the company plans to listen, learn, and work alongside patients, families, and advocates in the Becker community. 💙💛
This is an opportunity to hear directly about Servier’s approach and its commitment to partnering with the rare disease community.
📅 Register today: https://www.mda.org/care/community-ed/community-industry-update-webinars/2026/servier-muscular-dystrophy-partnering-for-progress-in-rare-diseases
10/07/2026
❄️ This holiday season, every checkout can help .
The MDA Holiday Retail Campaign brings together communities nationwide to support families living with muscular dystrophy, ALS and related neuromuscular diseases. Every donation helps advance care, resources, research and more. 💙💛
Learn how you can get involved: MDA.org/retail
Read more about this year's campaign: https://www.mda.org/press-releases/muscular-dystrophy-association-launches-nationwide-holiday-retail-campaign
Thank you to our incredible retail partners: Circle K, Florida Turnpike Services, GPM Investments, Piggly Wiggly and National Oil & Gas! 🙌
📸: Javen, who lives with Pompe disease, hopes sharing his story will inspire other families and encourage people to support the MDA.
10/05/2026
💙💛 Behind every child (and adult) living with a neuromuscular disease is a team of people MDA supports to help them keep moving forward. Today on , we’re celebrating Dash and the dedicated care team at Gillette Children's Hospital who support him and his family along the way.
From specialized multidisciplinary medical care to helping families navigate life with neuromuscular disease, MDA Care Center Network teams play an important role in helping people live longer, more independent lives.
Yesterday, Dash’s care team got to be part of something very special, celebrating his dream Star Wars Magic Wheelchair costume with him! 🚀
We’re grateful for the healthcare professionals who care for kids like Dash and for the families who inspire our mission every day.
Costume Builder: The art of Stefan Price
On , we’re celebrating the children, families, and care teams who inspire us every day.
For Dr. Kaitlin Batley of UT Southwestern Medical Center, meeting a young child with a neuromuscular condition for the first time changed her life. Years later, that child is older and thriving. The experience introduced Dr. Batley to a community defined by passion, resilience, and courage. 💪✨
That spirit comes to life at MDA Care Centers through a unique commitment to multidisciplinary care, bringing experts together to support the whole child and family. 💙💛
Today, we celebrate every child living with neuromuscular disease, every family walking alongside them, and every care provider helping them thrive. 🌟
Find support and guidance at https://www.mda.org
10/04/2026
🎉 We’re feeling the force of excitement from the MDA x Magic Wheelchair reveal today!🎉
In Minneapolis, Dash, who lives with spinal muscular atrophy (SMA), celebrated an early Halloween surprise in epic Star Wars style, complete with his very own dream costume from our amazing partners at Magic Wheelchair!💙💛
Today, was all about bringing his dream to life. Check out the unforgettable moment Dash saw his incredible Magic Wheelchair costume for the first time and met his heroes from Minneapolis Firefighters Local 82 who to make progress possible!🚒🔥
Huge thanks to our incredible partners who helped make this experience possible for Dash and his family: CITGO Fueling Good, International Association of Fire Fighters (IAFF), Minnesota Professional Fire Fighters - MPFF, National Association of Letter Carriers, [TAG] Acosta Group, Bionews’ Muscular Dystrophy News, Gillette Children's, and of course, the amazing Stanton family (Amanda Stanton)!
We continue to celebrate the recent FDA approval of Scholar Rock’s Isembyld (apitegromab-mstn) for SMA, empowering people like Dash! 💥Dash, we hope you love your Magic Wheelchair as much as we loved celebrating YOU! Happy Halloween! 👻
Costume Builder: The art of Stefan Price
10/04/2026
Quest Media is a finalist in the 11th Annual Shorty Impact Awards for Community Engagement!
This recognition belongs to the people who share their experiences and help make Quest a trusted place for information, connection, and conversation across the neuromuscular disease community.
👉 Read more and vote for Quest Media here: https://shortyawards.com/11th-impact/quest-media
10/03/2026
Research updates are only part of what families need to navigate life with neuromuscular disease.
At MDA Engage events, families can learn about emerging treatments while also exploring practical questions about equipment, advocacy, care, and resources for daily life. Sessions bring people living with neuromuscular disease and their families into direct conversation with clinicians, researchers, advocates, and other experts.
👉 Learn more about 2026 MDA Engage and find an event near you: https://www.mda.org/Engage
10/03/2026
She made people laugh. She made people care. She made people feel like they belonged.
Brooke Eby brought an unmistakable energy to everything she did. As an advocate, community builder, fundraiser, and friend, she used humor, honesty, and heart to change the way people understood ALS and to remind others they never had to face it alone.
Mindy Henderson reflects on the Brooke she knew and loved. The joy she shared, the people she brought together, and the lasting impact she leaves behind.
Read the full tribute to Brooke and celebrate a life that made an extraordinary difference.
https://mdaquest.org/remembering-brooke-eby-a-friend-who-taught-us-to-laugh-connect-and-live-fully/
10/02/2026
Accessible Air Travel is a right for people living with disabilities, air travel should be safe, dignified, and accessible, not a source of fear or uncertainty.
MDA is advocating for the Air Carrier Access Amendments Act (ACAAA), legislation that would strengthen accountability and protections for passengers with disabilities, including people who travel with wheelchairs and other mobility devices. MDA created this campaign and is continuing to push for change. Our partners at Muscular Dystrophy News Today are helping amplify the message and connect more people with the information and resources they need.
Join MDA’s advocacy community in urging Congress to support the ACAAA at and help advance safe, dignified and accessible air travel.
✈️ Take action: https://www.votervoice.net/MDA/Campaigns/139883/Respond
📘 Traveling by air? MDA’s Air Travel Guide offers practical tips for planning, navigating airports, protecting your mobility device, and understanding your rights.
🔗 Download the guide:https://www.mda.org/sites/default/files/2025/04/MDA-Air-Travel-Guide.pdf
Click here to claim your Sponsored Listing.
Category
Telephone
Website
Address
Opening Hours
| Monday | 9am - 5pm |
| Tuesday | 9am - 5pm |
| Wednesday | 9am - 5pm |
| Thursday | 9am - 5pm |
| Friday | 9am - 5pm |
Alerts
Be the first to know and let us send you an email when Muscular Dystrophy Association posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.