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Blog Post | Advocacy

Advancements in Accessible Air Travel: A Recap of Recent Developments

As the MDA Advocacy Team continues their work to support accessible air travel, we have two exciting efforts to share – one from Congress and one from the U.S. Department…

Tags: Accessible Air Travel, Advocacy Updates


Blog Post | Health, Science + Research

Clinical Study Alert: A Phase 1/2 Study of Safety and Efficacy of LX2006 Gene Therapy in Adults with Cardiomyopathy Associated with Friedreich Ataxia

Researchers at Lexeo Therapeutics, Inc. (Lexeo) are seeking adults with cardiomyopathy associated with Friedreich ataxia (FRDA) to participate in an open label, dose-ascending, multicenter Phase 1/2 clinical trial, called SUNRISE-FA…

Tags: Clinical Trial Alert, Clinical Trials, Gene Therapy


Blog Post | Advocacy, Finding a Diagnosis, Health, Inclusion, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Finding Freedom in Accepting My Disability

Rebecca C. Ball-Schaller, who goes by Becca, is an avid crafter, Christmas fanatic, and cat lover. Her guilty pleasure is watching old horror films. She lives in Pennsylvania with her…

Tags: Ambassador Guest Blog


Blog Post | Independence, Lifestyle

Accessible Spring-Cleaning Tools & Tips

For people living with physical disabilities, household tasks and chores can often present their own slew of challenges and barriers. Limitations in mobility, range of motion, energy, and muscle use…

Tags: Community, Resources


Blog Post | Health, News, Research, Science + Research

FDA’s Approval of Duvyzat (givinostat) Offers New Hope to People Living with Duchenne Muscular Dystrophy

On March 21, the  U.S. Food and Drug Administration gave final approval to Duvyzat (givinostat), a new treatment for children and adolescents living with Duchenne muscular dystrophy (DMD). In clinical…

Tags: Clinical Trials, Drug Approval, Drug Development, MDA Care Centers, Research, Research Advances


Blog Post | Health, News, Science + Research

At MDA Conference Neuromuscular Disease Experts Discuss Readiness for Gene Therapies

Are hospitals and healthcare institutions ready to administer new gene therapies? Experts weigh in at the MDA Clinical & Scientific Conference.

Tags: Featured Content, Gene Therapy, Healthcare, MDA Care Centers, MDA Clinical and Scientific Conference


Blog Post | Health, Personal Stories

MDA Ambassador Guest Blog: My Experience Participating in a Research Study

Lacey Woods is an MDA Ambassador living with LGMD2i (R9). She is a wife and mother of six children. She works with her husband in real estate and as a…

Tags: Ambassador Guest Blog


Blog Post | Uncategorized

In Case You Missed It…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and…

Tags: Ambassadors, Community, Drug Development, Healthcare, In Case You Missed It, Parenting, Relationships, Resources, Summer Camp


Blog Post | Finding a Diagnosis, Health, Science + Research

Simply Stated: The Creatine Kinase Test

Almost everyone with a neuromuscular disease has had, or will have, a creatine kinase test. But what exactly is creatine kinase (CK), and why are its levels measured in neuromuscular…

Tags: Simply Stated


Blog Post | News, Science + Research

Heart of the Muscular Dystrophy Association Mission Was in Focus at the 2024 MDA Clinical & Scientific Conference Opening Day

Brooke Eby spoke to researchers at the first day of the 2024 MDA Clinical & Scientific Conference and other highlights.

Tags: Featured Content, MDA Clinical and Scientific Conference, Research