Archives
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…
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
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
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
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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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
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…
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…
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…
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