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Blog Post | Science + Research

Clinical Research Alert: Phase 1b Study of SRD-001 in Adults with DMD-Related Cardiomyopathy

Researchers at Sardocor Corp are seeking adults with cardiomyopathy (heart disease) secondary to Duchenne muscular dystrophy (DMD) to participate in a phase 1b clinical trial to evaluate the safety and explore…

Tags: Clinical Trials, Research, Research Study Alert


Blog Post | Independence, Lifestyle

Holiday Gift Wrapping Made Easier: Accessible Tips & Tricks

As the holidays approach, ‘tis the season for holiday hacks and tips. One key (and sometimes daunting) task on many people’s holiday to-do list after the busy hustle and bustle…

Tags: Community


Blog Post | Research, Science + Research

Progress Through Partnership: MDA’s Collaborative Research Grants Drive Neuromuscular Science Forward

Progress in neuromuscular research has always depended on collaboration — scientists, families, advocates, and organizations uniting to accelerate the path to treatments. This spirit is at the heart of the…

Tags: Grants, Innovation, Research


Blog Post | Advocacy, Finding a Diagnosis, Inclusion, Independence, News, Tools& Resources

MDA Updates on Air Travel Advocacy

With the busy holiday travel season, many members of the neuromuscular community may be wondering about the latest policy developments in accessible air travel. This blog provides a round-up of…

Tags: Advocacy Updates, Community, Travel


Blog Post | Inclusion, Independence, Personal Stories

Community Voices: Finding Connection in the Shared Language of Living with a Disability

Bio: Sonali Gupta is an essayist, journalist, and audio producer. She holds a master’s degree in journalism from New York University and previously worked as an audio producer in Mumbai,…

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Blog Post | Research, Science + Research

Simply Stated: Updates in Primary Mitochondrial Diseases

Mitochondria, often called the “powerhouses of the cell,” generate much of the energy that our bodies need to function. When mitochondria fail, organs that require high levels of energy, like…

Tags: Clinical Trials, Healthcare, Research, Simply Stated


Blog Post | Advocacy, Get Involved, Inclusion, Independence, News, Tools& Resources

A Government Shutdown Couldn’t Stop Advocates During MDA on the Hill 2025

On November 2-4, 2025, despite a historic government shutdown, MDA returned to Washington, D.C. for MDA on the Hill. Grassroots advocates from across the country traveled to the nation’s capital…

Tags: Advocacy Updates, Community, MDA Advocacy, MDA Hill Day


Blog Post | Advocacy, Get Involved, Inclusion, Independence, Lifestyle, Personal Stories, Tools& Resources

MDA Ambassador Guest Blog: Breaking the Chains of Stigma in My Arab Community

Samaher (Sam) Abuzahriyeh is 33 years old and lives in Millbrae, CA. She was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 6 and began using a power wheelchair at…

Tags: Ambassador Guest Blog, Ambassadors, Community, Mental Health, Relationships, Young Adults


Blog Post | Health, Science + Research, Tools& Resources

Clinical Research Alert: Natural History Study of Individuals with Cardiomyopathy Associated with FRDA

Researchers at Lexeo Therapeutics are seeking individuals with cardiomyopathy associated with Friedreich’s Ataxia (FRDA) to participate in an observational study (CLARITY-FA). The assessments and questionnaires from this study will help to…

Tags: Clinical Trial Alert, Clinical Trials


Blog Post | Advocacy, Get Involved, Health, Inclusion, Independence, Lifestyle, Personal Stories, Tools& Resources

Letters from Lily: Advice for Parents of Children with Neuromuscular Disease

Hello! For those of you who don’t already know me, my name is Lily and I live with Charcot-Marie-Tooth disease (CMT). While I am not a parent, these recommendations come…

Tags: Ambassador Guest Blog, Ambassadors, Caregiving, Letters from Lily, Lily, MDA Ambassadors, MDA National Ambassador Blog, Mental Health, Parenting, Relationships, Young Adults