Archives
Embrace Your Body
Queen, who lives with Bethlem myopathy When it comes to body positivity, perspective matters. These advocates are changing how the world sees them — and how they view themselves, too
Tags: Featured Content, Mental Health, Resources
Demystifying Drug Prices
Why are new therapies for neuromuscular diseases so expensive?
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
STEM Connections
MDA program brings STEM students and professionals together to discuss education and careers
Tags: Access MDA, Ambassadors, Education, Employment
2021 Reader Photo Contest Winners
Meet the winners of Quest’s Lasting Impression photo contest
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, Transitions
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…
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
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…
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…