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Blog Post | Advocacy, Get Involved, Inclusion, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: The Sailing of a Lifetime

Living in Pennsylvania with her son, Victoria is an active volunteer with her local newspaper, parent-teacher organization, and LGMD News magazine as an Assistant Editor. Her social media accounts are a…

Tags: Ambassador Guest Blog


Blog Post | Health, Independence, Lifestyle, Personal Stories

Letters From Leah: I Love Me!

In today’s fast paced world, we often forget to take care of ourselves.  We focus so much on helping others that we often tend to put our own feelings and…

Tags: Ambassadors, Leah, Letters From Leah, Mental Health


Blog Post | Independence, News, Research

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: Accessible Air Travel, Drug Approval, In Case You Missed It, Innovation, Research, Research Advances


Blog Post | Health, News, Science + Research

Clinical Study Alert: Phase 2 Study of Vamorolone in Adults with BMD

Researchers at the University of Pittsburgh are seeking adults living with Becker muscular dystrophy (BMD) to participate in a phase 2 double-blind, placebo-controlled study to evaluate the safety and efficacy of…

Tags: Clinical Trial Alert, Clinical Trials


Blog Post | Advocacy, Get Involved, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Embracing Adventure (with a Little Help from My Friends)

Travis Rasmussen is 30 years old. He lives in Wisconsin, but will soon move to Virginia to live with his brother, Tyler. Travis was diagnosed with spinal muscular atrophy (SMA)…

Tags: Ambassador Guest Blog


Blog Post | Health, News, Science + Research

Clinical Study Alert: Natural History Studies of Individuals with DMD and Their Caregivers

Researchers at the Center for Health + Technology at the University of Rochester are seeking individuals with Duchenne muscular dystrophy (DMD) and their adult caregivers to participate in observational REDCap surveys,…

Tags: Clinical Trial Alert, Clinical Trials


Blog Post | Health, Science + Research

Episode 39- Behind the Scenes: A Look at the Science and Research for New Treatments

In this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee.  Both have devoted their time…

Tags: Drug Development, Gene Therapy, Healthcare, Innovation, Research, Research Advances


Blog Post | Get Involved, Lifestyle

Celebrating the Impact of MDA Volunteers

After an entire year spent celebrating MDA volunteers for the 2023 Year of the Volunteer, MDA is excited to celebrate and recognize our volunteers this National Volunteer Month 2024. The…

Tags: Volunteers, Year of the Volunteer


Blog Post | Health, News, Science + Research

Clinical Study Alert: Phase 2 Study of Brogidirsen in Boys with DMD

Researchers at NS Pharma are seeking boys with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping therapy to participate in a phase 2 clinical trial to evaluate the safety, efficacy,…

Tags: Clinical Trial Alert, Clinical Trials


Blog Post | Advocacy

Advancements in Accessible Air Travel: A Recap of Recent Developments

As the MDA Advocacy Team continues their work to support accessible air travel, we have two exciting efforts to share – one from Congress and one from the U.S. Department…

Tags: Accessible Air Travel, Advocacy Updates