Archives
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.
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
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
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…
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.
MDA National Ambassador Blog-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
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
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
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
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