Archives
Announcing the 2024 MDA Clinical & Scientific Conference Agenda
The 2024 MDA Clinical & Scientific Conference is just around the corner. We’re looking forward to you joining us, as we showcase groundbreaking research and clinical accomplishments by dedicated professionals…
9 Questions to Ask Before Joining a Clinical Trial
Experts recommend asking these nine questions before joining a clinical trial so you know what to expect.
Episode 36- Wrapping Up 2023 with Leah and Amy
In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA…
Tags: Ambassadors, Amy, Community, Genetic Testing, Healthcare, Leah, Mental Health, Relationships, Staying Active, Young Adults
Simply Stated: Research Updates in Leigh Syndrome
Leigh syndrome is a rare, neurodegenerative disorder caused by defects in the mitochondria, the energy-producing structures within our cells. This disorder often begins in infancy or early childhood and causes…
Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Education, Healthcare, Innovation, MDA Care Centers, MDA Resource Center, Research, Resources, Simply Stated
6 Questions to Ask Your Doctor to Get a Diagnosis
When doctors don’t know what you have, ask your healthcare providers these important questions to help them get to a diagnosis.
Tags: Featured Content, Healthcare
Make a Smooth Transition From Pediatric to Adult Healthcare
What you need to know to make a smooth transition from pediatric to adult healthcare for muscular dystrophy and other neuromuscular diseases.
Episode 35- Bridging the Gap Between Intention, Action, and Community Inclusion
In this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org, President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast.…
AGAMREE ® (Vamorolone), Now FDA-Approved, Offers Hope for Children Living with Duchenne Muscular Dystrophy
The recent FDA approval of Catalyst’s AGAMREE ® (vamorolone) is a beacon of hope for people living with Duchenne muscular dystrophy (DMD), a rare but serious degenerative muscle disease. According…
Coping with Family Caregiver Fatigue
Tips for family caregivers to recognize the signs of caregiver burnout and manage stress to prevent it.
Insurance Denials for Gene Therapy Treatment Delay Access to Care
The FDA approval of ELEVIDYS (delandistrogene moxeparvovec-rokl), the first-ever, gene therapy treatment for young boys living with Duchenne muscular dystrophy (DMD), brought unprecedented hope to families living with DMD. Designed…
Tags: Gene Therapy, Healthcare, Insurance, MDA Care Centers, MDA Resource Center, My Gene Therapy Journey, Resources