Inclusion and Accessibility for All: Understanding Your Rights as a Shopper

For those living with physical disabilities, accessibility is a cornerstone of inclusion. While a focus on inclusivity and diversity has become more prevalent in the last ten years, with many businesses and retailers recognizing the need for change, a large percentage of public shopping entities are not particularly accessible. Many Americans with disabilities encounter physical…

Simply Stated: Research Updates in Pompe Disease

Pompe disease (also called acid maltase deficiency) is a rare, metabolic muscle disorder that causes slow, progressive muscle weakness, especially of the respiratory (breathing) muscles and those of the hips, upper legs, shoulders and upper arms. Though two main subtypes of Pompe disease have been described, infantile and late onset, Pompe is sometimes thought of…

MDA Peer Connections Program Creates Lasting Friendships

The MDA Peer Connections Program provides an opportunity for members of the neuromuscular disease community to build bonds with one another, both across the country and in their own neighborhoods. During the peak of the COVID-19 pandemic, this was especially comforting for those who felt an increased need for connection during the heightened months of…

2023 MDA Clinical and Scientific Conference Starts Strong

The first day of the 2023 MDA Clinical & Scientific Conference covered FDA approval, gene therapy, ultra-rare diseases, and more.

MDA Ambassador Guest Blog: The Magic of MDA Summer Camp

MDA Ambassador Leticia Tatum, 42, of Birmingham, Alabama was diagnosed with SMA at the age of two. She currently serves as the Vice President of Human Resources at Valent Group. When not busy with work, Leticia and her husband, Doug, enjoy traveling and spending time with their two dogs, Maci and Mango. Remembering the Magic…

Quest Podcast: The Changing Landscape of Neuromuscular Care

As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. In this episode of Quest Podcast, we sit down with Dr. Matthew Harms, a neuromuscular neurologist and neruogenetics expert,…

How Small Endeavors Make a Big Impact

MDA’s mission to fund groundbreaking research for neuromuscular disease treatment and provide families with the highest quality care would not be possible without the generous donation of time and resources from our volunteers, sponsors, and supporters. Dedicating time as a volunteer or supporting various fundraising opportunities throughout the year are both powerful ways that individuals…

Make Sure You Don’t Lose Your Medicaid Coverage

Many Americans, including those living with a neuromuscular disease, rely on Medicaid to access vital medical care, especially during the COVID-19 pandemic. However, as the federal Public Health Emergency (PHE), declared during the pandemic, winds down, those on Medicaid might inadvertently lose their coverage. Don’t let this happen to you! Below is a helpful Q&A…

Clinical Trial Alert: Phase 2 Study of ALXN2050 in Adults with Generalized Myasthenia Gravis (gMG)

Researchers at Alexion AZ Rare Disease are seeking adults living with generalized myasthenia gravis (gMG) to participate in a phase 2 clinical trial (ExpanD Study) to evaluate the safety and efficacy of ALXN2050 (vemircopan) to treat gMG. ALXN2050 is being evaluated for the ability to improve the activities of daily living (ADL) of people with gMG.…

For Ukrainians with Rare Diseases, Life is Still a Struggle

February 28 marked Rare Disease Day — an annual event calling attention to the 300 million people worldwide who live with one or more of the 7,000 illnesses classified as rare, which includes all neuromuscular diseases. February also marked one year since Russia invaded Ukraine, launching a war that has killed tens of thousands of…

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 members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities.

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QUEST PODCAST

The Quest podcast, proudly presented by the Muscular Dystrophy Association, is part of the Quest family of content. Hosted by Quest Editor-in-Chief, motivational speaker and writer Mindy Henderson.

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Episode 27 – The Changing Landscape of Neuromuscular Care

March 14, 2023

As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. We sit down with Dr. Matthew Harms, a neuromuscular neurologist and neruogenetics expert, to discuss what these changes mean…

Episode 26 – Catching Up with Bill Crossland

February 15, 2023

For our February Valentine’s Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences with our live audience as we chat about dating with a disability, love, relationships, and his feature-length-film “Catching Up”.  His movie is available to stream…

Episode 25 – New Year, New Mindset

January 17, 2023

We are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores, who lives with spinal muscular atrophy, in front of a live audience. Jose is a professional speaker, “mindset disruptor,” and #1 best-selling author of “Don’t…