Archives

Retired Los Angeles County fire fighter Bob Hook spent his career answering the call for others. After his ALS diagnosis, he found himself surrounded by the same fire fighter community…

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…

Janna Leach is 43 years old and lives in Louisiana.  She has a bachelor’s degree in education from LSU and currently has my own tutoring business.  Jana loves meeting new people,…

Valosin-containing protein (VCP)-associated multisystem proteinopathy (VCP-MSP), also sometimes called VCP disease, is a rare inherited condition caused by changes in the VCP gene. These gene changes can affect multiple body…

Author Gus Alexiou Being Heumann opens in selected US cinemas on November 6 and on Apple TV on November 13. The film, from Siân Heder, the Oscar-winning director of CODA…

Researchers at PTC Therapeutics are conducting the phase 3 Long-Term Efficacy Study of Vatiquinone for the Treatment of Friedreich’s Ataxia (PROVE-FA) study to learn more about Friedreich’s ataxia (FA) and to…

The 2024 Wheelchair Rule was passed to improve air travel for people with disabilities under the ACAA. But some rules are paused. Here’s what you need to know.

Rodrigo Duran is a 35-year-old Latino who lives in Dallas, TX. He is an artist who studied at the Art Institute of Dallas. Although Rigo has dealt with many challenges…

Every March, the leading clinicians and researchers in the field of neuromuscular disease join industry partners, advocacy organizations, and community members at the MDA Clinical & Scientific Conference to share…

In this episode of the Quest Podcast, we chat with Kiersten Riggs, a 24-year-old rare disease advocate from Tulsa, Oklahoma, who was a varsity cheerleader when her family first heard…