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Blog Post | Independence

Living Independently with a Disability

Tips, tricks, tools, and products from experts and members of the neuromuscular disease community to help you live independently with a disability.

Tags: Ambassadors, College, Equipment and Assistive Devices, Featured Content, Ira, Parenting, Resources, Travel


Blog Post | Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Celebrating and Supporting LGBTQ+

Rigo is an artist who studied at the Art Institute of Dallas. Although he has dealt with many challenges due to living with a neuromuscular disease, he likes to focus…

Tags: Ambassador Guest Blog, Ambassadors, College, Relationships, Young Adults


Blog Post | Health, Science + Research

Simply Stated: Updates in GNE Myopathy

GNE myopathy is an inherited neuromuscular disease (NMD) characterized by progressive atrophy (thinning) of the skeletal muscles. GNE myopathy was previously called hereditary inclusion body myopathy (HIBM) or Nonaka myopathy…

Tags: Simply Stated


Blog Post | Get Involved, Inclusion, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Embracing Inclusive Venues and Adventures

Justin Lopez is 30 years old. He currently lives in Toledo, Ohio, but originates from Farmington Hills, Michigan. Justin was diagnosed with Limb-girdle Muscular Dystrophy (LGMD 2B) at the age…

Tags: Ambassador Guest Blog, Ambassadors, Community, Relationships


Blog Post | Lifestyle

Find Accessible Beaches for Summer Fun

Beach destinations are recognizing that people with disabilities want to travel to accessible beaches. Here’s how to plan a wheelchair-friendly beach vacation.

Tags: Featured Content, Staying Active, Travel


Blog Post | Advocacy, Inclusion, Independence

Celebrating Recent Significant Milestones in Disability Rights

Over the past few months, we’ve witnessed two significant milestones in the history of disability rights law. In May, we were invited to attend an announcement marking the finalization of…

Tags: Advocacy Updates


Blog Post | Inclusion, Lifestyle

Splash Into Accessible Swimming This Summer

Summertime often brings to mind sunshine, blue skies, cook-outs, yard games…and swimming! Having fun in the pool is a refreshing way to get exercise, socialize or relax, and cool off…

Tags: Community, Resources, Staying Active


Blog Post | Health, Science + Research

Clinical Trial Alert: Phase 2 Pivotal Study of Sevasemten (EDG-5506) in Adults with Becker Muscular Dystrophy

Researchers at Edgewise Therapeutics are seeking adults living with Becker muscular dystrophy to participate in a global Phase 2 pivotal study, GRAND CANYON, to evaluate the safety and efficacy of sevasemten…

Tags: Clinical Trial Alert, Clinical Trials


Blog Post | Advocacy, News, Research

Federal Appropriations: MDA and Neuromuscular Disease Community Priorities

Each year, Congress must create and pass legislation to fund the government’s operations and programs. This process is called the federal appropriations process and is a complex and often hard-to-predict…

Tags: Advocacy Updates, Newborn Screening, Research


Blog Post | Get Involved, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Fatherhood and Adaptive Parenting

Matt Curcio is a writer, speaker, and advocate. Matt lives in New Jersey with his wife, cats, and children. He lives with Collagen 6 Related Dystrophy. He specializes in traveling…

Tags: Ambassador Guest Blog, Ambassadors, Community, Parenting, Relationships