One Family’s Decades of Dedication to MDA Summer Camp

The Helget family has been volunteering at MDA Summer Camp for more than four decades. It all started with Craig, who lived with Duchenne muscular dystrophy, attending camp for the first time in 1984. Nine-year-old Craig returned home from his first week at camp and regaled his parents and siblings with tales of his adventures…

Quest Podcast: Finding Joy in the Midst of Change

In this Quest Podcast episode, we chat with MDA Ambassador Jess Westman about embracing individuality and finding joy in our lives as paths and priorities change. The activist, actor, composer, author, and podcaster has devoted his career to providing joy and laughter to others and finds personal fulfillment through his faith and advocacy. Jess joins…

Clinical Research Opportunity: LION-CS101 a Phase 1/2 Study of AB-1003 in Adults with LGMD2I/R9

Researchers at AskBio are seeking adults with genetically confirmed limb-girdle muscular dystrophy (LGMD) type 2I/R9 to participate in a phase 1/2 clinical trial (LION-CS101) to evaluate the safety and tolerability of the investigational gene therapy AB-1003 to treat LGMD2I/R9. LGMD2I/R9 is a rare form of LGMD caused by changes in the FKRP gene and is associated…

Simply Stated: Updates in Neuromuscular Junction (NMJ) Disorders

The neuromuscular junction (NMJ) disorders are a group of conditions that disrupt the communication between motor neurons and muscles, resulting in muscle weakness, fatigue, problems with movement and mobility, and, in severe cases, paralysis. Recognized NMJ disorders include the autoimmune disorders myasthenia gravis (MG) and Lambert-Eaton myasthenic syndrome (LEMS), the genetic conditions known as congenital myasthenic…

Pro Tips to Add More Movement to Your Day

Adding more movement or physical activity to each day is a common goal among people living with neuromuscular disease. However, muscle fatigue, weakness, and limited strength or range of motion can make increasing physical activity a challenge. The age-old conundrum of “if you don’t use it, you lose it” conflicts with the need for rest…

Essential Gear for Traveling with a Disability

Discover essential gear to pack for a smooth trip when traveling with a disability, from mobility aids to adaptive equipment.

Insights by Ira: A Celebration of the Best of MDA Center Care Physicians

Prior to the start of 2025, I began the usual and customary exercise of establishing professional and personal goals for the new year.  While I have many goals this year, including writing my first fiction novel, expanding my culinary abilities and sharing my love of cooking through online videos, and continuing to have a consistent…

Making an Impact on Day 1 of the MDA Clinical and Scientific Conference

The first day of the 2025 MDA Clinical & Scientific Conference featured stirring opening remarks, research awards, and a keynote by the former FDA Commissioner.

Celebrating 25 Years of Impact: MDA’s Wings Over Wall Street Gala Honors Leaders in ALS Research and Advocacy

For a quarter of a century, MDA’s Wings Over Wall Street has brought the ALS community together in New York City, raising millions of dollars to advance research and improve care. This year marks the 25th anniversary of the annual benefit, an evening dedicated to honoring extraordinary individuals who are driving progress in the fight…

MDA Ambassador Guest Blog: Make Sense? Say Yes!

Grace LoPiccolo, 21, of St. Louis, Missouri, was diagnosed with CMT-1A at the age of nine. She currently attends Saint Louis University majoring in Bioethics and Health Studies, and  Catholic studies. She is currently a Junior but ultimately plans on attending law school and pursuing a field in health and disability policy. Additionally, at Saint…

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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Why You Should Practice Shared Healthcare Decision-Making

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Milestone Moment: A Look Back at the First Gene Therapy Trial for DMD

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Stem Cell Innovations Drive Advances in Muscle Regeneration

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Six members of two different generations of the Helget family pose on the porch of a camp cabin

One Family’s Decades of Dedication to MDA Summer Camp

By Rebecca Hume | April 3, 2025

Quest Podcast: Finding Joy in the Midst of Change

By MDA Staff | April 2, 2025

Clinical Research Opportunity: LION-CS101 a Phase 1/2 Study of AB-1003 in Adults with LGMD2I/R9

By MDA Staff | March 31, 2025
Degradation of motor neurons, conceptual computer illustration. Motor neuron diseases are a group of neurodegenerative disorders including amyotrophic lateral sclerosis, progressive bulbar palsy and other. Amyotrophic lateral sclerosis, also referred to as Lou Gehrig's disease is the most common of the motor neuron diseases. Nerve degeneration and restricted production of the neurotransmitter dopamine results in deterioration of muscle tissue. This debilitating disease is characterized by rapidly progressive weakness, muscle atrophy and twitching, muscle spasticity, difficulty speaking (dysarthria), difficulty swallowing (dysphagia), and difficulty breathing (dyspnea).

Simply Stated: Updates in Neuromuscular Junction (NMJ) Disorders

By Sujatha Gurunathan | March 31, 2025
Brunette woman working out on wheelchair at home.

Pro Tips to Add More Movement to Your Day

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Barbara and Jim Twardowski pose on a bridge over the Seine in Paris with the Eiffel Tower visible in the background. Barbara is sitting in a wheelchair and Jim is standing behind her.

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By Barbara and Jim Twardowski, RN | March 24, 2025

Insights by Ira: A Celebration of the Best of MDA Center Care Physicians

By Ira Walker | March 20, 2025

Making an Impact on Day 1 of the MDA Clinical and Scientific Conference

By Amy Bernstein | March 18, 2025

Celebrating 25 Years of Impact: MDA’s Wings Over Wall Street Gala Honors Leaders in ALS Research and Advocacy

By MDA Staff | March 16, 2025
at burn with family in workout clothes: from left to right: Bryce Pattison (boyfriend), Ann Lopiccolo (mom-burn ambassador), Grace LoPiccolo (me), Molly Graf (sister), Stephen Graf (brother-in-law- trainer)

MDA Ambassador Guest Blog: Make Sense? Say Yes!

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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 51- Finding Joy in the Midst of Change

April 2, 2025

In this Quest Podcast episode, we chat with MDA Ambassador Jess Westman about embracing individuality and finding joy in our lives as paths and priorities change. The activist, actor, composer, author, and podcaster has devoted his career to providing joy and laughter to others and finds personal fulfillment through his faith and advocacy. Jess joins…

Episode 50- PJ’s Protocol: A Lifesaving Procedure Fueled by Love

March 6, 2025

In this episode of Quest Podcast, we chat with three pillars of the Duchenne muscular dystrophy community who are here with us on the 10th anniversary of PJ’s protocol. First, we have Brian Nicholoff whose son’s untimely passing was the catalyst for the creation of PJ’s protocol. Next is Amy Aikens whose son’s life was…

Episode 49- Navigating Romance with MDA Ambassadors

February 13, 2025

In this episode of Quest Podcast, we chat with three of our MDA Ambassadors. Nora is a passionate animal advocate and lives with Selenon (SEPN1)-related myopathy (RM). Justin is a disability advocate and an Operations Manager and lives with Limb-girdle Muscular Dystrophy and K.L. is an entrepreneur, poker professional, and influencer living with Spinal Muscular…