Writing About Adversity Leads to Unexpected Benefits

Chris Anselmo, who lives with limb-girdle muscular dystrophy (LGMD), shares why he started writing about handling adversity.

Nature Lover With Myotonic Dystrophy Paints a Room With a View

Heather Nightingale lives with myotonic dystrophy type 1 (DM1) and painted a mural to heal and reconnect with nature in her home.

How to Get One-on-One Support From MDA

MDA offers many opportunities to connect with a specialist on our team to get one-on-one support.

Managing Myasthenia Gravis With Grace

Professional dancer Carol Alvarez manages myasthenia gravis (MG) and a career in the performing arts.

Can Wearables and Smartphones Make Clinical Trials Better?

New digital health technologies and wearables can improve research and access to clinical trials for people with neuromuscular diseases.

Understanding Titinopathies

Titinopathies researcher Bjarne Udd, MD, PhD, details progress on neuromuscular disorders associated with the Titin (TTN) gene.

Planning For Your Long-Term Care Needs

Advice on how to plan ahead for long-term care needs and a stable financial future with a progressive neuromuscular disease.

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…

Ambassador Guest Blog: The Joy of Motherhood

Cassidy Nilles is 34 years old and lives in Illinois. Cassidy lives with Limb Girdle muscular dystrophy (LGMD) type 2J. She lives with her daughter, Capri, and their 9-year-old maltipoo, Mila, in a ranch-style home that they share with her parents. After spending 10 years as a cosmetologist doing hair in both Los Angeles and…

Simply Stated: Updates in SELENON (SEPN1)- Myopathy (SELENON-RM)

SELENON (SEPN1)-related myopathy (SELENON-RM) is a rare congenital neuromuscular condition characterized by slowly progressive axial (trunk and head) muscle weakness, early-onset rigidity of the spine, scoliosis (sideways curve of the spine), and respiratory insufficiency (breathing impairment). One study estimated that SELENON-RM affects about 0.5 in 100,000 people. Symptoms of SELENON-RM SELENON-RM is an inherited condition that…

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…