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 of Transportation (DOT). If both efforts become a reality, it will result in the most transformative improvements to air travel in several decades, and the…

Clinical Study Alert: A Phase 1/2 Study of Safety and Efficacy of LX2006 Gene Therapy in Adults with Cardiomyopathy Associated with Friedreich Ataxia

Researchers at Lexeo Therapeutics, Inc. (Lexeo) are seeking adults with cardiomyopathy associated with Friedreich ataxia (FRDA) to participate in an open label, dose-ascending, multicenter Phase 1/2 clinical trial, called SUNRISE-FA (NCT# 05445323) to evaluate the safety and efficacy of the investigational gene therapy LX2006. FRDA is caused by mutations in the FXN gene that lead…

MDA Ambassador Guest Blog: Finding Freedom in Accepting My Disability

Rebecca C. Ball-Schaller, who goes by Becca, is an avid crafter, Christmas fanatic, and cat lover. Her guilty pleasure is watching old horror films. She lives in Pennsylvania with her husband where she works as a middle school teacher. The journey to my diagnosis has been a long one. Out of the six children born…

Accessible Spring-Cleaning Tools & Tips

For people living with physical disabilities, household tasks and chores can often present their own slew of challenges and barriers. Limitations in mobility, range of motion, energy, and muscle use can make it difficult to maintain a clean home. These spring-cleaning tips, tricks, and tools can make cleaning your home a more accessible, efficient, and…

FDA’s Approval of Duvyzat (givinostat) Offers New Hope to People Living with Duchenne Muscular Dystrophy

On March 21, the  U.S. Food and Drug Administration gave final approval to Duvyzat (givinostat), a new treatment for children and adolescents living with Duchenne muscular dystrophy (DMD). In clinical trials, the treatment, a histone deacetylase (HDAC) inhibitor, was shown to slow the progression of this disease. The Muscular Dystrophy Association, who funded the foundational…

At MDA Conference Neuromuscular Disease Experts Discuss Readiness for Gene Therapies

Are hospitals and healthcare institutions ready to administer new gene therapies? Experts weigh in at the MDA Clinical & Scientific Conference.

MDA Ambassador Guest Blog: My Experience Participating in a Research Study

Lacey Woods is an MDA Ambassador living with LGMD2i (R9). She is a wife and mother of six children. She works with her husband in real estate and as a trauma coach in Washington State. Her favorite sweet treat is popcorn with M&Ms. Lacey encourages others living with LGMD2i (R9) to join the 2i Facebook…

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 members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…

Simply Stated: The Creatine Kinase Test

Almost everyone with a neuromuscular disease has had, or will have, a creatine kinase test. But what exactly is creatine kinase (CK), and why are its levels measured in neuromuscular diseases? CK, also known as phosphocreatine kinase, or CPK, is a type of protein called an enzyme. It catalyzes, or “encourages,” a biochemical reaction to…

Heart of the Muscular Dystrophy Association Mission Was in Focus at the 2024 MDA Clinical & Scientific Conference Opening Day

Brooke Eby spoke to researchers at the first day of the 2024 MDA Clinical & Scientific Conference and other highlights.

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.

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 38: Love Made Simple with DateAbility’s Alexa and Jacqueline Child

In this Quest Podcast episode, we chat with the founders of DateAbility, a dating application geared towards individuals with disabilities and chronic illnesses. Alexa and Jacqueline Child have devoted their time to create a safe and accepting space that allows individuals to create meaningful connections.  Their goal is to make love accessible for everyone. These…

Episode 37- How to find Meaning and Fulfillment with Isaac Banks

In this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for others and finds personal fulfillment through his faith and…

Episode 36- Wrapping Up 2023 with Leah and Amy

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are…