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Blog Post | Science + Research

9 Questions to Ask Before Joining a Clinical Trial

Experts recommend asking these nine questions before joining a clinical trial so you know what to expect.

Tags: Clinical Trials, Featured Content, Gene Therapy, MDA Care Centers, Research


Blog Post | Science + Research

Research Study Alert: Noninterventional Study in People with DMD and BMD

Study Coordinators at CureDuchenne Link® are seeking individuals living with Duchenne or Becker muscular dystrophy (DMD or BMD) or carriers to participate in a noninterventional study. The objective of this study is…

Tags: Research, Research Advances, Research Study Alert


Blog Post | Advocacy, Finding a Diagnosis, Inclusion

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: Advocacy Updates, Ambassadors, Amy, Community, Leah


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

Simply Stated: Updates in Collagen VI-Related Dystrophy

Collagen VI-related dystrophy (COL6-RD) is a rare genetic muscle disease caused by defects in one of three genes that form a triple helix protein (collagen VI) found in the extracellular…

Tags: Clinical Trials, Drug Development, Genetic Testing, Healthcare, Innovation, MDA Care Centers, MDA Resource Center, Research, Research Advances, Simply Stated


Blog Post | Get Involved, Personal Stories

Getting to Know Your 2024 MDA National Ambassadors

MDA’s Ambassadors are pivotal to our mission: empowering people living with neuromuscular disease to live longer, more independent lives. We strive to fulfill our mission through care, research, and advocacy.…

Tags: Ira, Leah, National Ambassadors


Blog Post | Research

Remote Digital Technology Research Study for ALS Seeking Participants

The MDA MOVR program has paired with Mitsubishi Tanabe Pharma America, Inc. (MTPA) to collaborate on a remote observational research study focusing on Amyotrophic Lateral Sclerosis (ALS). The newly developed…

Tags: MOVR, Research Study Alert


Blog Post | Research

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

Researchers at PathMaker Neurosystems Inc. are seeking individuals living with amyotrophic lateral sclerosis (ALS) to participate in a feasibility study to evaluate the safety and tolerability of an investigational neuromodulation…

Tags: Clinical Trial Alert


Blog Post | Advocacy, Get Involved

Celebrating Our 2023 Advocacy Accomplishments

From major legislative and regulatory progress on crucial issues, to our in-person Hill Day in Washington, D.C., 2023 has truly been a landmark year for MDA advocates. Because of your…

Tags: Accessible Air Travel, Advocacy Updates, Drug Approval, Healthcare, Newborn Screening


Blog Post | Get Involved

Mark Your Calendar: Upcoming MDA Events

MDA Events bring community members, advocates, volunteers, sponsors, and MDA staff together as they gather for a cause and celebrate community. In-person events offer attendees and volunteers a powerful opportunity…

Tags: Community, Fundraising


Blog Post | Finding a Diagnosis, Health

Key Diagnostic Tests for Neuromuscular Diseases

A guide to diagnostic tests most commonly used when there are symptoms of a neuromuscular disease.

Tags: Featured Content, Genetic Testing