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What Makes You Uncomfortable About Advocacy?
What makes us uncomfortable? Maybe it is speaking up when we feel uncertain about something, or perhaps starting a new project, new job, or another major life change. For MDA’s…
Tags: Advocacy Updates, Community
Nutritional Considerations While on Corticosteroids
Nutrition when taking corticosteroids like prednisone and deflazacort: foods to avoid and healthy diet plans.
Tags: Featured Content, Nutrition
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…
Job Searching With a Disability | How to Prepare for the Interview Process
For job seekers with disabilities, the job search may include questions and challenges that others may not regularly come up against. In addition to wondering whether the roles you’re applying…
Tags: Community, Employment
FestAbility Celebrates Disability Pride and Community
A family enjoys dessert at the 2022 FestAbility event. Photo credit: FestAbility. As the 2023 FestAbility event approaches, Sarah Schwegel is excited to once again gather, connect, and celebrate with…
Tags: Community
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
Clinical Trial Alert: Phase 3 Study of Batoclimab in Adults with MG
Researchers at Immunovant are seeking adults who have mild to severe generalized myasthenia gravis (MG) to participate in a phase 3 clinical trial (FLEX) to evaluate the safety and efficacy of…
Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Healthcare, Innovation, Research, Research Advances
Company Volunteer Time Off Programs Benefit Everyone
As many employers recognize the benefit of volunteerism, more and more companies are beginning to offer Volunteer Time Off (VTO) programs. VTO programs offer employees the opportunity take time off…
Simply Stated: Research Updates in Periodic Paralysis
Periodic paralysis (PP) is a rare genetic condition that causes sudden, temporary episodes of muscle weakness, stiffness, or paralysis (inability to move). These episodes may affect the whole body or…
Tags: Healthcare, Innovation, MDA Resource Center, Research, Research Advances, Resources, Simply Stated
Research Study Alert: Observational Study of Cardiovascular Function in Children with BMD or DMD
Researchers at University of Delaware are seeking children living with Becker muscular dystrophy (BMD) or Duchenne muscular dystrophy (DMD) to participate in a study designed to determine the effects of BMD…