Simply Stated: Updates in Endocrine Myopathies

Endocrine myopathies are muscle disorders caused by abnormal activity of the endocrine (hormone-producing) glands, which include the thyroid, adrenal, parathyroid, pituitary, and gonadal glands. Too much or too little hormone production by these glands can cause weakness and atrophy (thinning) of the skeletal muscles that control voluntary movements. People with endocrine myopathies often experience symptoms…

Former Collegiate Athlete Shares How to Stay Positive When Plans Change

To say that life does not always go as planned is an understatement. Unexpected changes during life’s journey often require individuals to make difficult decisions, sacrifices, and adjustments. And due to the progressive nature of most neuromuscular diseases (NMD), this is especially true for those living with an NMD diagnosis. Jayston Paulson, a former collegiate-level…

Clinical Study Alert: Open-Label, Observational Study of Risdiplam in Adults with SMA

Researchers at Ohio State University are seeking adults with spinal muscular atrophy (SMA) who have been treated with the FDA-approved therapy risdiplam (brand name Evrysdi®) to participate in an open-label clinical study to evaluate the effect of the drug on neuromuscular junction (NMJ) transmission. SMA involves the loss of muscle-controlling nerve cells (motor neurons) in the…

Treatment Options for Autoimmune Neuromuscular Diseases

Scientists are still trying to find out what causes autoimmune neuromuscular diseases, but breakthroughs are leading to more treatment options than ever.

The Value of Community and Connection through Sports and NMD

Darci Garcia is 44 years old. She is originally from Iowa and has been living in suburban Houston, Texas for the last 17 years. Darci is a wife, mother, retired special education teacher, and former collegiate soccer player. She has been living with amyotrophic lateral sclerosis (ALS) since 2018. Darci enjoys music, Astros baseball, watching…

Clinical Trial Alert: Phase 3 Study of ALXN1720 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 3 clinical trial (PREVAIL Study) to evaluate the safety and efficacy of ALXN1720 (gefurulimab) to treat gMG. ALXN1720 is being evaluated for the ability to improve the activities of daily living (ADL) of people with gMG.…

Insights by Ira on Summers of Friendship & Growth: Life Lessons from MDA Camp

I remember the magic of MDA Summer Camp like it was yesterday, especially taking a swim with all of my friends on a scorching summer day! It is one of those things that you never forget. It was a hot and humid early summer afternoon, and we were all gathered at the right place, at…

Building With Universal Design Is Good for Everyone

How building with universal design creates spaces that are inclusive and enjoyable for everyone, and how to find accessible places.

A Guide to Getting Involved in Adaptive Sports

There is an adaptive sport for every ability. Read this guide to get started and find programs, resources, and equipment.

Can Neuromuscular Disease Affect Your Bones?

Learn the three factors that contribute to bone loss, low bone density, and osteoporosis for people with neuromuscular diseases.

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 41- Courage Kindled: A Hero’s Unbreakable Spirit

In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s Disease, He and…

Episode 40- Unlocking Access and Inspiring Action with Sophie Morgan

In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. Sophie is a co-founder of Making…

Episode 39- Behind the Scenes: A Look at the Science and Research for New Treatments

In this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee.  Both have devoted their time and expertise to create and move forward research and treatments for neuromuscular diseases.  Their goal is to create successful treatments and eventually a cure for…