Archives
Hydration for Wheelchair Users
Avoiding the restroom? Healthy hydration tips for people who limit liquids due to wheelchairs or mobility issues.
Tags: Featured Content, Nutrition, Travel
Our Fight to Improve Air Travel Moves Forward
Big news in our effort to make air travel more accessible for people living with a disability. This June, the House Transportation and Infrastructure Committee unanimously passed its version of…
Pursuing Passion: From MDA Volunteer to MDA Employee
Scott Wiebe, MDA Director of Community Programs MDA’s Director of Community Programs Scott Wiebe, credits volunteering at MDA Summer Camp as one of the single most impactful experiences in his…
Quest Podcast: A Conversation with Steve Way
In this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to…
Tags: Community, Mental Health, Relationships, Young Adults
FDA Approves Sarepta’s ELEVIDYS for Treatment of DMD
On June 22, the US Food and Drug Administration (FDA) granted accelerated approval of ELEVIDYS (delandistrogene moxeparvovec-rokl) for the treatment of ambulatory pediatric patients aged 4 through 5 years with Duchenne…
Tags: Drug Approval, Drug Development, Gene Therapy, Healthcare, Innovation, Research, Research Advances
Summertime Travel Go-Anywhere Products and Tips
Packing for vacation when you live with a disability requires a little extra planning and preparation. Travel often demands additional considerations to provide easy access to essentials and ensure that…
FDA Approves argenx’s Vyvgart Hytrulo for Treatment of gMG
On June 20, the US Food and Drug Administration (FDA) granted marketing approval of subcutaneous (SC) Vyvgart Hytrulo (efgartigimod alfa and hyaluronidase-qvfc) for the treatment of generalized myasthenia gravis (gMG)…
Tags: Drug Approval
Hope for the Future: A Family Living with Myofibrillar Myopathy Zaspopathy Raises Awareness for Rare Disease Research
Janet Rodenhouse and her sisters have a lot in common. The seven women share a love for dancing, a deep appreciation of finding humor in all things, and a strong…
Tags: Community, Fundraising, Genetic Testing, Relationships, Research
A Letter to Muscular Dystrophy
Dear Muscular Dystrophy, MDA National Ambassador Amy Shinneman At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to…
Tags: Ambassadors, Amy, Mental Health, Relationships
How One Family’s Myasthenia Gravis Journey is Helping Others
Charlotte and Elizabeth Madole. For many individuals living with a rare disease, the road to diagnosis can be extremely challenging, especially when it involves two co-existing diseases where two parts…
Tags: Community, Healthcare, MDA Care Centers, Parenting, Research