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Monday 9am - 5pm Tuesday 9am - 5pm Wednesday 9am - 5pm Thursday 9am - 5pm Friday 9am - 5pm

Muscular Dystrophy Association

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!

06/13/2026

MDA supports many types, including Duchenne, Becker, limb-girdle, and facioscapulohumeral (FSHD).

Learn more at https://www.mda.org/disease

06/11/2026

If summer had a highlight reel, camp would make the cut. ☀️🎬

💙💛 MDA Summer Camp is a place for kids living with neuromuscular disease to connect, have fun, and create memories and friendships that last a lifetime.

👉 Apply today: https://www.mda.org/summer-camp

06/10/2026

When patients, families, and clinicians come together, progress happens. 💙💛

Elizabeth’s journey with myasthenia gravis (MG), alongside her care team, including Dr. Alexander Fay, MDA Care Center Director at UCSF Benioff Children's Hospitals, demonstrates the impact of collaboration between lived experience and clinical research. Together, they developed a poster presented at the 2026 MDA Clinical & Scientific Conference, contributing to a deeper understanding of rare neuromuscular diseases and helping shape future care.

🔬 Their work reflects what makes the MDA community so powerful: connection, shared learning, and a commitment to turning personal experiences into meaningful progress for all.

The MDA Resource Center offers support, information, and guidance for people and families affected by neuromuscular disease. Learn more at https://www.mda.org/care/mda-resource-center

Photos from Muscular Dystrophy Association's post

06/09/2026

Recently, MDA advocates joined nearly 100 volunteers from organizations across the country for United for Cures Hill Day on Capitol Hill. Together, they urged Congress to protect and increase funding for NIH medical research that drives progress toward treatments and cures.💪💙💛

From powerful personal stories to meetings with more than 80 Congressional offices, advocates made one message clear: investing in research changes lives.🔬✨

👉 Read more: https://mdaquest.org/mda-joins-forces-to-protect-nih-funding/

06/08/2026

📢 Join us on June 17, 2026, at 2:00 PM EST for Spotlight On: Myasthenia Gravis!

This free virtual learning program will explore:
🔹 The diagnostic journey of Myasthenia Gravis and recognizing key symptoms
🔹 Current standards of care and emerging treatment options
🔹 Practical strategies for fatigue management and daily living to support independence, functioning, and quality of life

Gain valuable insights from experts and connect with a community dedicated to education and support.

✅ Register for FREE today: https://www.mda.org/care/community-ed/mda-virtual-learning/2026/spotlight-on-myasthenia-gravis

Thank you to our program supporters: Alexion Pharmaceuticals, ArgenX, EMD Serono, Regeneron, UCB Biopharma, and Vor Bio

06/08/2026

🎙️Family caregiver Nicole Lucas and her daughter, law student Carlee Weber, share a powerful conversation about caregiving, independence, advocacy, and the support families need to thrive.

From personal sacrifices to policy solutions, this episode highlights why supporting family caregivers is more important than ever.

🎧 Listen to the full episode: https://mdaquest.org/podcast/episode-63-the-people-behind-the-people-family-caregiving-policy-and-the-power-of-showing-up/

06/07/2026

Join MDA on July 18 for the MDA Engage Seminar, presented in partnership with Penn State Health Milton S. Hershey Medical Center. This special event is designed for individuals living with neuromuscular diseases, as well as their families, caregivers, and support networks. 💙💛

Spend the day gaining valuable insights, meeting others in the community, and discovering resources that can make a difference in everyday life. Through engaging presentations and meaningful conversations, attendees will have the opportunity to:

✨ Learn from healthcare professionals and subject matter experts
✨ Connect with peers who understand the neuromuscular disease journey
✨ Explore practical tools, support services, and helpful resources
✨ Build relationships and strengthen community connections

No matter where you are on your journey—whether you're newly diagnosed, caring for someone you love, or seeking support and connection—MDA Engage offers a welcoming environment to learn, share, and grow together.

🔗Register today: https://www.mda.org/care/community-ed/mda-engage/2026/mda-engage-community-seminar-with-penn-state-health-milton-s-hershey-medical-center

Special thanks to our MDA Engage sponsors: BridgeBio, Novartis, Amgen, ArgenX, Biogen, Catalyst Pharmaceuticals, Inc., Dyne Therapeutics, Johnson & Johnson, Sarepta Therapeutics, Upsher-Smith

06/05/2026

Research to Reality: At MDA, our relentless pursuit of scientific breakthroughs is turning today’s innovative research into tomorrow’s life-changing realities.

06/05/2026

In recognition of MG Awareness Month, MDA is spotlighting the voices and journeys of people living with myasthenia gravis all month long.

What happens when a nurse who cared for myasthenia gravis patients discovers she has the condition herself?

Tina Vassar shares her 30+ year voyage with generalized myasthenia gravis, from years of unexplained symptoms and diagnosis challenges to finding strength, community, and hope.✨

"At first, I felt like I was in a dinghy in an open ocean without a compass. Now, I have a compass and a community."

🔗 Read her full post story: https://mdaquest.org/mda-ambassador-guest-blog-my-myasthenia-gravis-voyage/

06/04/2026

📅 Join us on June 9, 2026, from 3:00–4:00 PM EST for our Daily Living Webinar: Managing Anxiety featuring Emily Brechting, PhD from Juniper Psychological Services.

This free virtual learning program will explore:
✨ Anxiety in the context of neuromuscular disease
✨ Common signs and symptoms of anxiety for individuals and care partners
✨ Practical strategies and resources to help manage anxiety

🎟️ Register for FREE today: https://www.mda.org/care/community-ed/mda-virtual-learning/2026/daily-living-managing-anxiety

Thank you to our program supporter: Biogen and Edgewise Therapeutics

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Telephone

+18005721717

Website

http://www.mda.org/

Address

Chicago, IL

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Muscular Dystrophy Association

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