Archives




Blog Post | Independence

Introducing MDA Connect

At MDA, we are proud and excited to announce the launch of a new service that will bring us closer to our community. Through our Resource Center and our team…

Tags: Community, MDA Resource Center, Resources


Blog Post | Get Involved, Lifestyle

2023: Year of the Volunteer

Leading the way as the #1 Voluntary Health Organization for over 70 years, at MDA volunteers are at the forefront of our legacy. Families are at the heart of our…

Tags: Volunteers, Year of the Volunteer


Blog Post | Advocacy

Celebrating Our 2022 Advocacy Accomplishments

From passing key legislation to our Virtual Summit and Hill Day, 2022 has been an exceptional year for MDA advocates. You raised your voices and key decisionmakers heard all of…

Tags: Accessible Air Travel, Advocacy Updates, Newborn Screening


Blog Post | News, Personal Stories

MDA Honors the Life and Legacy of Victor Wright

Victor Wright Hope for a longer, more independent life is now becoming a reality for patients with muscular dystrophy and related diseases. Many stakeholders have played a vital role over…

Tags: Community


Blog Post | Independence, Lifestyle, Personal Stories

Quest for Success: Peter Saleh

As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to present the final instalment in our 2022 blog series: “Quest…

Tags: College, Community, Education, Employment, Quest for Success


Blog Post | Science + Research

Perspectives on Gene Therapy Products for Neuromuscular Disease

On Nov. 15, the US Food and Drug Administration (FDA)’s Center for Biologics Evaluation and Research (CBER) Office of Tissues and Advanced Therapies (OTAT) hosted a patient-focused drug development (PFDD)…

Tags: Gene Therapy


Blog Post | Science + Research

Research Study Alert: Survey Examining Transfers of Care in the SMA Community

Researchers at Brandeis University are seeking adults living with spinal muscular atrophy (SMA) to participate in a survey about their experiences with transition planning and transfers of care between pediatric and adult…

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Blog Post | Science + Research

Clinical Trial Alert: Medical Device Feasibility Study for People with Paralysis

Researchers at Synchron are seeking individuals living with paralysis due to various causes, including muscular dystrophy, stroke, spinal cord injury, amyotrophic lateral sclerosis, and spinal muscular atrophy, to participate in a…

Tags: Clinical Trial Alert


Blog Post | Science + Research

Clinical Trial Alert: Phase 2 Study of a New Tool for Muscle Assessment in People with Neuromuscular Disease

Researchers at Ohio State University are seeking individuals living with neuromuscular diseases, including muscular dystrophy, facioscapulohumeral muscular dystrophy (FSHD), and limb-girdle muscular dystrophy (LGMD), to participate in a phase 2 clinical…

Tags: Clinical Trial Alert


Blog Post | Independence

2022 Highlights – The Year of Independence

Throughout 2022 MDA’s impact continued to grow as we advanced our mission to empower the people we serve to live longer, more independent lives while building on our legacy of…

Tags: Accessible Air Travel, Advocacy Updates, Community Education, Gene Therapy, Grants, MDA Care Centers, MDA Clinical and Scientific Conference, MDA Engage, Research, Summer Camp, Year of Independence