Clinical Research Alert: Phase 1b Study of SRD-001 in Adults with DMD-Related Cardiomyopathy

Researchers at Sardocor Corp are seeking adults with cardiomyopathy (heart disease) secondary to Duchenne muscular dystrophy (DMD) to participate in a phase 1b clinical trial to evaluate the safety and explore the efficacy of the investigational gene therapy SRD-001 (AAV1/SERCA2a). In heart failure, the body does not make enough of the SERCA2a protein, which helps heart…

Holiday Gift Wrapping Made Easier: Accessible Tips & Tricks

As the holidays approach, ‘tis the season for holiday hacks and tips. One key (and sometimes daunting) task on many people’s holiday to-do list after the busy hustle and bustle of shopping for presents is: gift wrapping. For those living with neuromuscular disease, limited dexterity and/or range of motion and muscle weakness and fatigue can…

Progress Through Partnership: MDA’s Collaborative Research Grants Drive Neuromuscular Science Forward

Progress in neuromuscular research has always depended on collaboration — scientists, families, advocates, and organizations uniting to accelerate the path to treatments. This spirit is at the heart of the Muscular Dystrophy Association’s latest announcement: nearly $2 million in new collaborative research grants awarded with seven partner organizations to advance breakthroughs across ALS, congenital myopathies,…

MDA Updates on Air Travel Advocacy

With the busy holiday travel season, many members of the neuromuscular community may be wondering about the latest policy developments in accessible air travel. This blog provides a round-up of recent activity on the issue and news you can use as you make your own travel plans this winter. Remember that passengers with disabilities have…

Community Voices: Finding Connection in the Shared Language of Living with a Disability

Bio: Sonali Gupta is an essayist, journalist, and audio producer. She holds a master’s degree in journalism from New York University and previously worked as an audio producer in Mumbai, where she lived for over a decade. Her writing focuses on health, disability, and culture, with work appearing in The New York Times — including…

Simply Stated: Updates in Primary Mitochondrial Diseases

Mitochondria, often called the “powerhouses of the cell,” generate much of the energy that our bodies need to function. When mitochondria fail, organs that require high levels of energy, like the muscles, brain, and heart, can be affected, leading to conditions known as primary mitochondrial diseases. These diseases can result from genetic mutations in nuclear…

A Government Shutdown Couldn’t Stop Advocates During MDA on the Hill 2025

On November 2-4, 2025, despite a historic government shutdown, MDA returned to Washington, D.C. for MDA on the Hill. Grassroots advocates from across the country traveled to the nation’s capital to urge lawmakers to support policies that will empower the neuromuscular community, including protecting access to health care, supporting medical research funding, and easing the burden…

MDA Ambassador Guest Blog: Breaking the Chains of Stigma in My Arab Community

Samaher (Sam) Abuzahriyeh is 33 years old and lives in Millbrae, CA. She was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 6 and began using a power wheelchair at age 17. She enjoys writing poetry in Arabic, watching shows across genres and languages, exploring accessible trails and scenic spots in the Bay Area with…

Clinical Research Alert: Natural History Study of Individuals with Cardiomyopathy Associated with FRDA

Researchers at Lexeo Therapeutics are seeking individuals with cardiomyopathy associated with Friedreich’s Ataxia (FRDA) to participate in an observational study (CLARITY-FA). The assessments and questionnaires from this study will help to provide valuable data about heart disease in FRDA and advance Lexeo’s gene therapy research. The study This is an observational study, which means that participants…

Letters from Lily: Advice for Parents of Children with Neuromuscular Disease

Hello! For those of you who don’t already know me, my name is Lily and I live with Charcot-Marie-Tooth disease (CMT). While I am not a parent, these recommendations come directly from my lived experience growing up with neuromuscular disease. This blog candidly reflects what truly helped me build confidence, self-worth, and a positive identity…

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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Clinical Research Phase 1b Study

Clinical Research Alert: Phase 1b Study of SRD-001 in Adults with DMD-Related Cardiomyopathy

By MDA Staff | December 5, 2025
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Holiday Gift Wrapping Made Easier: Accessible Tips & Tricks

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By MDA Staff | December 4, 2025

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By Sujatha Gurunathan | November 26, 2025

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m With singer and performer Mohammed Assaf at a fundraiser event for Islamic Relief USA supporting Palestine in San Jose (October 2019)

MDA Ambassador Guest Blog: Breaking the Chains of Stigma in My Arab Community

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By MDA Staff | November 21, 2025

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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.

See All Episodes

Episode 58- Wrapping Up 2025 with Ira and Lily

December 1, 2025

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Lily S. and Ira Walker. Lily is a dedicated advocate finishing her first year as a National Ambassador. She  shares her journey, why she believes it is important to advocate for yourself and others, and what she has learned along the way….

Episode 57- Voices of Inclusion: Celebrating NDEAM with Disability:IN

October 21, 2025

October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, Executive Vice President of Strategy & Programs at Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion,…

Episode 56- Precision Medicine: Mapping the Genetic Code for New Treatments

September 24, 2025

In this Quest Podcast episode, we chat with Dr. Stephan Züchner, Dr. Conrad “Chris” Weihl, and the Interim Chief Research Officer of the Muscular Dystrophy Association, Dr. Angela Lek.  Leaders in the field of genetic mapping, all three have devoted their time and expertise to research and treatments for neuromuscular diseases.  Their goal is to…