Archives




Featured Article | Science + Research

Demystifying Drug Prices

Why are new therapies for neuromuscular diseases so expensive?

Tags: Drug Approval, Drug Development, Featured Content, Healthcare, Innovation, Resources


Featured Article | Personal Stories

Claiming My Courage

Jessica Stephan and her son, who is now 9 years old. I had to face my son’s diagnosis to take better care of my family and myself

Tags: From Where I Sit, Parenting


Featured Article | Independence, Lifestyle

STEM Connections

MDA program brings STEM students and professionals together to discuss education and careers

Tags: Access MDA, Ambassadors, Education, Employment


Featured Article | Independence, Personal Stories

2021 Reader Photo Contest Winners

Meet the winners of Quest’s Lasting Impression photo contest

Tags: Lasting Impression, Relationships, Staying Active


Blog Post | Independence, Lifestyle, Personal Stories

How Parents Can Help Kids Prepare for Adult Life

For 18 years, Linda VanVliet spent most of her non-working time taking care of her daughter, Shelby, who was diagnosed with congenital muscular dystrophy at 3 years old. (That diagnosis…

Tags: Parenting, Relationships, Resources, Summer Camp


Blog Post | Health, Independence

Online Therapy and Support Groups Are Good for Your Mental Health

When the COVID-19 pandemic began, much of the healthcare system shifted from primarily face-to-face visits to a wider acceptance of telehealth, or virtual appointments using computers, tablets, or smartphones. Health…

Tags: Healthcare, Mental Health, National Connections Program, Relationships, Resources


Blog Post | Finding a Diagnosis, Health

What You Need to Know About Finding and Visiting an MDA Care Center

Located at more than 150 of the top healthcare institutions across the United States, MDA Care Centers serve as the nexus for expert clinical care and medical research. Our Care…

Tags: Healthcare, MDA Care Centers, Resources


Blog Post | Science + Research

Clinical Trial Alert: Phase 2/3 Study of Tideglusib (AMO-02) in Children and Adolescents with Congenital Myotonic Dystrophy

Researchers at AMO Pharma Ltd are seeking children and adolescents living with congenital myotonic dystrophy (DM1), also known as Steinert disease, to participate in a phase 2/3 clinical trial (REACH…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development


Blog Post | Science + Research

Clinical Trial Alert: Early Phase Study of SRP-9001 in Boys with DMD

Researchers at Stanford Neuroscience Health Center are seeking 3-year-old boys living with Duchenne muscular dystrophy (DMD), particularly in California, to participate in an early phase clinical trial (a new cohort of…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development


Blog Post | News, Science + Research

Muscular Dystrophy Association Awards 18 Grants Totaling Over $1.6 Million for Neuromuscular Disease Research

On Oct. 28, 2021 the Muscular Dystrophy Association (MDA) announced the awarding of 18 new grants totaling over $1.6 million toward neuromuscular disease (NMD) research. These new grants represent a…

Tags: Drug Development, Exon Skipping, Gene Therapy, Grants, Healthcare, Innovation, Research