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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 are 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 are seeking working parents of children living with Duchenne muscular dystrophy (DMD) to participate in a survey about their experiences. The goal is to evaluate whether organizational resources…

Tags: Research Study Alert


Blog Post | Science + Research

The Value of Natural History Studies for Neuromuscular Disease

In order to prepare for drug development in the neuromuscular disease (NMD) field, some researchers are focusing on natural history studies to better understand these rare diseases. Natural history studies…

Tags: Clinical Trials, Drug Development, Innovation, Research, Research Advances, Resources


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

Simply Stated: Research Updates in Emery-Dreifuss Muscular Dystrophy (EDMD)

Emery-Dreifuss muscular dystrophy (EDMD) is a rare genetic disorder that affects muscle and joint function, and is often associated with cardiac (heart) complications. The exact prevalence of EDMD is unknown,…

Tags: Clinical Trials, Drug Development, Gene Therapy, Simply Stated


Blog Post | Health, Inclusion

How to Find an Accessible Dentist

Christy Hickman (left) and Peyton (right) have experienced many of the common challenge of finding accessible dental care. From small exam rooms to uncomfortable dental chairs, many dentists’ offices are…

Tags: Featured Content, Healthcare


Blog Post | Science + Research

Clinical Trial Alert: Phase 3 Study of Pozelimab and Cemdisiran in Adults with gMG

Researchers at Regeneron are seeking adults who have symptomatic, generalized myasthenia gravis (gMG), presenting with anti-AChR antibodies or anti-LRP4 antibodies, to participate in a phase 3 clinical trial (NIMBLE) to evaluate…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development


Blog Post | Health

What You Need to Know About Substance Use Disorder

The CDC estimates that 40.3 million individuals in America experienced Substance Use Disorder (SUD) in the year 2020. SUD, also commonly referred to as substance abuse or addiction, is a…

Tags: Community, Healthcare, Mental Health, Resources


Blog Post | News, Science + Research

FDA Approves Biogen’s Qalsody for Treatment of SOD1-ALS

On April 25, the US Food and Drug Administration (FDA) granted accelerated marketing approval of Qalsody (tofersen) for the treatment of amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s…

Tags: Clinical Trials, Drug Approval, Drug Development, Healthcare, Research, Research Advances