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Featured Article | News, Science + Research

2023 MDA Clinical & Scientific Conference Makes an Impact

The 2023 MDA Clinical & Scientific Conference helped the scientific community and individuals living with neuromuscular diseases and their families stay informed on research and care.

Tags: Clinical Trials, Gene Therapy, MDA Clinical and Scientific Conference, Research


Featured Article | Finding a Diagnosis, Health, Personal Stories

Learning to Manage the Grief of a Progressive Disease

It’s normal to feel grief after being diagnosed with a neuromuscular disease or losing physical function to a progressive disease. Here’s how to handle it.

Tags: Featured Content, Mental Health


Blog Post | Finding a Diagnosis, Health, Lifestyle, Personal Stories, Science + Research

Understanding Nutrition and Metabolic Disease

Mark Tarnopolsky, MD, PhD, FRCP(C), professor of Pediatrics at McMaster Children’s Hospital in Hamilton, Ontario, remembers clearly one of the first patients he saw in practice almost 25 years ago…

Tags: Education, Healthcare, Resources, Staying Active


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

Quest Podcast: Expert Accessible Travel Tips for Your Next Vacation

Summer is around the corner! In this Quest Podcast episode, we chat with two renowned travel writers who live with physical disabilities. Sylvia Longmire, creator of the Spin the Globe…

Tags: Accessible Air Travel, Community, Staying Active, Travel


Blog Post | Finding a Diagnosis, Health

Why Is It So Hard to Get a Diagnosis?

Doctors explain why it can take a long time to get a diagnosis for a neuromuscular disease and what you can do about it.

Tags: Featured Content, Healthcare, MDA Care Centers


Blog Post | Lifestyle, Personal Stories

Letters from Leah: A Letter to Mothers

Leah (right) and her mother, Bevi (left) Dear Mothers, There is truly NO person in this world like a Mother. I can’t think of anyone who will stop the world…

Tags: Ambassadors, Community, Leah, Letters From Leah, Parenting


Blog Post | Health, Inclusion, Personal Stories

Women With Disabilities Need Gynecologists, Too

Women with neuromuscular diseases and other disabilities have the same needs for gynecologic exams, contraception, and pregnancy-related care as any other woman.

Tags: Featured Content, Healthcare


Blog Post | Lifestyle, News, Personal Stories

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: Community, In Case You Missed It


Blog Post | Science + Research

Clinical Trial: Phase 1/2 Study of BIIB105 in Individuals with ALS

Researchers at Biogen areΒ seeking individuals with amyotrophic lateral sclerosis (ALS) to participate in a phase 1/2 clinical trial (ALSPIRE) to evaluate the safety, effectiveness, and pharmacological properties of the investigational…

Tags: Clinical Trial Alert


Blog Post | Science + Research

Research Study Alert: Survey for Working Caregivers of Children with DMD

Researchers at Rice University areΒ seeking working parents of children living withΒ Duchenne muscular dystrophy (DMD) to participate in a survey about their experiences. The goal is to evaluate whether organizational resources…

Tags: Research Study Alert