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…

Celebrating the Impact of MDA Volunteers

After an entire year spent celebrating MDA volunteers for the 2023 Year of the Volunteer, MDA is excited to celebrate and recognize our volunteers this National Volunteer Month 2024. The incredible impact that MDA has had on the neuromuscular disease (NMD) community and treatment landscape would not be possible without the dedication of our valuable…

Clinical Study Alert: Phase 2 Study of Brogidirsen in Boys with DMD

Researchers at NS Pharma are seeking boys with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping therapy to participate in a phase 2 clinical trial to evaluate the safety, efficacy, and dynamics in the body of the investigational exon 44 skipping therapy brogidirsen (NS-089/NCNP-02-201). DMD is caused by mutations that lead to the loss of…

Advancements in Accessible Air Travel: A Recap of Recent Developments

As the MDA Advocacy Team continues their work to support accessible air travel, we have two exciting efforts to share – one from Congress and one from the U.S. Department of Transportation (DOT). If both efforts become a reality, it will result in the most transformative improvements to air travel in several decades, and the…

Clinical Study Alert: A Phase 1/2 Study of Safety and Efficacy of LX2006 Gene Therapy in Adults with Cardiomyopathy Associated with Friedreich Ataxia

Researchers at Lexeo Therapeutics, Inc. (Lexeo) are seeking adults with cardiomyopathy associated with Friedreich ataxia (FRDA) to participate in an open label, dose-ascending, multicenter Phase 1/2 clinical trial, called SUNRISE-FA (NCT# 05445323) to evaluate the safety and efficacy of the investigational gene therapy LX2006. FRDA is caused by mutations in the FXN gene that lead…

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 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…

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

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…

Episode 37- How to find Meaning and Fulfillment with Isaac Banks

In this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for others and finds personal fulfillment through his faith and…