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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
Research Study Alert: Natural History Study in Males with BMD
Researchers at the University of Florida are seeking adult males living with Becker muscular dystrophy (BMD) to participate in a three-year natural history study. The objective of this observational study is to…
Tags: Research Study Alert
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
MDA Ambassador Guest Blog: Happy Father’s Day
Nevin Steiner and his children, Abbott and Laurel. Being a father is one of the most rewarding things in life. I have two children, Abbott (6) and Laurel (3). Add having…
Experience the Power of Community at MDA In-Person Events
As MDA welcomes back a busy schedule of in-person events this year, there are a myriad of ways that individuals can come together and reap the benefits of time well…
MDA on the Hill 2023: Advocates Return to Washington, D.C.
We are back in person (and better than ever!) MDA National Ambassador Amy Shinneman, MDA National Ambassador Leah Z., and Advocate Reagan Imhoff at Hill Day. It’s been over three…
The Trans New Hampshire Bike Ride: One Man’s Road to Advocacy
Nevin Steiner with his wife and two children. ESPN Digital Producer Nevin Steiner has found his life’s mission in sharing the message that “it’s not what you can’t do in…
Tags: Advocacy, Ambassadors, Community, Fundraising
MDA Ambassador Guest Blog: Taking Care of Our Mental Health
I feel like our mental health is something we don’t discuss enough. I want to share how Muscular Dystrophy has affected my mental health, because honestly speaking, there have been…