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…

Simply Stated: The Creatine Kinase Test

Almost everyone with a neuromuscular disease has had, or will have, a creatine kinase test. But what exactly is creatine kinase (CK), and why are its levels measured in neuromuscular diseases? CK, also known as phosphocreatine kinase, or CPK, is a type of protein called an enzyme. It catalyzes, or “encourages,” a biochemical reaction to…

Heart of the Muscular Dystrophy Association Mission Was in Focus at the 2024 MDA Clinical & Scientific Conference Opening Day

Brooke Eby spoke to researchers at the first day of the 2024 MDA Clinical & Scientific Conference and other highlights.

MDA Announces College Scholarship Program

The Muscular Dystrophy Association (MDA) is excited to announce the launch of its inaugural MDA College Scholarship program. Continuing MDA’s endeavors to support and empower individuals living with neuromuscular disease to pursue their educational goals and thrive in the workplace, the new initiative is designed to cultivate a network of support and leadership development for…

Inclusion Outshines Ableism on the Big Stage

The disability community is making history this year with a first-of-its-kind musical production created from start to finish by members of the spinal muscular atrophy (SMA) community. Debuting on Rare Disease Day, February 29, Most Likely Not To… is an original musical that offers a fresh and candid look at life with a disability. Centering…

Simply Stated: Muscle Biopsy

A muscle biopsy is a surgical procedure in which one or more small pieces of muscle tissue are removed for microscopic examination and biochemical or genetic testing. The procedure, sometimes used in the diagnosis of a muscle disorder, is considered “minor” surgery and is usually performed under local anesthetic. Muscle biopsy used to be more…

All 50 States and DC Implement Spinal Muscular Atrophy Newborn Screening

2024 has already brought several exciting developments throughout MDA’s advocacy priorities and policy areas, but one of the biggest victories for the MDA community so far this year is the full implementation of routine screening for spinal muscular atrophy (SMA) in all 50 U.S. states and Washington, DC. This means that every child born with…

MDA Guest Ambassador Blog: How MDA Summer Camp Shaped Me

Juliette is 17 years old and lives in Florida. She is a senior in high school and will be attending FAU next fall to begin her career in social work. Juliette has Charcot-Marie-Tooth. She uses leg braces and has been an ambulatory wheelchair user since diagnosis. Juliette enjoys being involved in local theater and reading…

Simply Stated: Updates in LAMA2 Muscular Dystrophy

LAMA2-related muscular dystrophy (LAMA2-RD) is a rare neuromuscular condition characterized by proximal (close to the body center), axial (head and trunk), and facial weakness, elevated creatine kinase (CK), central and peripheral nervous system involvement, and respiratory insufficiency. LAMA2-RD is a spectrum disorder that is generally divided into two main phenotypes: the more severe, early-onset form…

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

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…

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 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…

Episode 36- Wrapping Up 2023 with Leah and Amy

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are…