Access to Neuromuscular Disease Care for Black People and People of Color

A look at equity in treatment and access to care for Blacks and other people of color in the neuromuscular disease community.

Inclusion, Expression, and Advocacy in the Art World

The last few years have presented small steps in the right direction for a long overdue societal shift in mindset when it comes to inclusion for those living with disabilities. Educators and employers have recognized the historical disparity in access to higher education and employment and have placed a much-needed increased focus on inclusion and…

Simply Stated: Updates in Oculopharyngeal Muscular Dystrophy (OPMD)

Oculopharyngeal muscular dystrophy (OPMD) is a rare, slowly progressive muscle disease that is characterized by weakness of the eyelids (ocular) and throat (pharyngeal) muscles. In some cases, OPMD also causes muscle weakness in the arms and legs. Though the exact prevalence is not known, it is estimated that there are less than 50,000 people living…

To Tilt or Not to Tilt: The Benefits of Tilt in Space Wheelchairs

Three signs that you might need a tilt-in-space wheelchair and how to choose the right one for your mobility.

MDA Welcomes its 2023 National Ambassadors

MDA’s ambassadors are pivotal to our mission: empowering people living with neuromuscular disease to live longer, more independent lives. We do that through care, research, and advocacy. Our ambassadors are incredible partners who volunteer their time to help evangelize what MDA is and what we do, and put a face to the community we serve. …

MDA’s 2023 Advocacy Plan

It’s a new year with a new year Congress. But what hasn’t changed is MDA’s commitment to improving the lives of people living with neuromuscular diseases. We accomplished a lot last year, and MDA and its advocates are eager to keep up the momentum and achieve even more victories in 2023. We are excited to…

The Value of Volunteerism

Volunteerism affords individuals an opportunity to progress the mission of organizations that they are passionate about. Without the valuable time and talent of volunteers, most nonprofit organizations would not be able to successfully serve their mission. At MDA, the significant impact that volunteers have across the many programs, fundraising initiatives, and community events in our…

Navigating the Long Journey to a Rare Disease Diagnosis

Misdiagnoses are common in the neuromuscular disease community. Here are tips for navigating the journey to a rare disease diagnosis.

2023 MDA Clinical & Scientific Conference Keynote Speaker – FDA’s Peter Marks, M.D., Ph.D.

The Muscular Dystrophy Association (MDA) is excited to welcome Peter Marks, M.D., Ph.D. as the Keynote Speaker at the MDA 2023 Clinical & Scientific Conference. His presentation will take place Monday, March 20, 2023, in-person in Dallas, TX, and via live stream. “It’s my privilege to be a part of this important global gathering convened…

Introducing MDA Connect

At MDA, we are proud and excited to announce the launch of a new service that will bring us closer to our community. Through our Resource Center and our team of Family & Clinical Support Specialists, we are here for you every day to help get you the tools, information, care and education you need.…

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.

Episode 25 – New Year, New Mindset

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…

Episode 24 – Embracing Life with a Disability

On this episode of Quest podcast, we join forces with hosts of the popular podcast “Embrace It,” Estela Lugo and Lainie Ishbia. Both women live with Charcot Marie Tooth (CMT) and are active with the Hereditary Neuropathy Foundation, raising awareness and offering support to their community. Estela and Lainie bring their incredible chemistry and personality…

Episode 23 – Advocacy, Accessibility, and the DOT

Barriers in travel and the lack of accessible transportation are huge issues for many people living with nueromuscular disease and other physical disabilities. Today, we chat with Kelly Buckland, a disability policy advisor at the U.S. Department of Transportation (DOT), and Michael Lewis, the director of disability policy at MDA. Both guests play active roles…