How to Cope When Your Child Is Diagnosed

Tips to cope and live with hope when your child is diagnosed with muscular dystrophy or any neuromuscular disease.

Special Olympic Silver-Medalist Shines Bright in Her Community

Summer Nagele is intent on sharing her gifts and talents with the world. The 19-year-old activist, advocate, and athlete has competed in more than 60 Special Olympic events, showcasing her skills in basketball, soccer, track and field, bocce ball, unified bags (also known as cornhole or beanbag toss), softball, golf, volleyball, and gymnastics. Following her…

Coping With a Difficult Diagnosis: Your Emotions Are Normal

You’re not alone when coping with a diagnosis of muscular dystrophy or neuromuscular disease. Here are tips for handling your feelings and finding resources to live well.

MDA Ambassador Guest Blog: The Sailing of a Lifetime

Living in Pennsylvania with her son, Victoria is an active volunteer with her local newspaper, parent-teacher organization, and LGMD News magazine as an Assistant Editor. Her social media accounts are a one-stop shop for adaptive products for the neuromuscular community. Traveling outside of the country has always been on my bucket list if time, money, and…

Letters From Leah: I Love Me!

In today’s fast paced world, we often forget to take care of ourselves.  We focus so much on helping others that we often tend to put our own feelings and health aside. Don’t get me wrong, there is nothing wrong with taking care of the ones we love. In fact, being there for them shows…

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…

Clinical Study Alert: Phase 2 Study of Vamorolone in Adults with BMD

Researchers at the University of Pittsburgh are seeking adults living with Becker muscular dystrophy (BMD) to participate in a phase 2 double-blind, placebo-controlled study to evaluate the safety and efficacy of vamorolone to treat BMD. Studies conducted on boys with Duchenne muscular dystrophy (DMD) have shown that vamorolone has beneficial effects with lower side effects than…

MDA Ambassador Guest Blog: Embracing Adventure (with a Little Help from My Friends)

Travis Rasmussen is 30 years old. He lives in Wisconsin, but will soon move to Virginia to live with his brother, Tyler. Travis was diagnosed with spinal muscular atrophy (SMA) type 3 at age 3. He is mostly independent, but needs support with certain things and uses a wheelchair when traveling long distances, like at…

Clinical Study Alert: Natural History Studies of Individuals with DMD and Their Caregivers

Researchers at the Center for Health + Technology at the University of Rochester are seeking individuals with Duchenne muscular dystrophy (DMD) and their adult caregivers to participate in observational REDCap surveys, DMD-Health Index (DMD-HI) and DMD Caregiver Reported-Health Index (DMDCR-HI) respectively. The findings of these surveys will help to determine how DMD disease burden changes over…

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…

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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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.

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Episode 40- Unlocking Access and Inspiring Action with Sophie Morgan

April 22, 2024

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

April 1, 2024

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…

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

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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…