In this episode of Muscle Owl Talks, host Peter Duffy chats with Jon Hastie, a Duchenne muscular dystrophy patient who made the film A Life Worth Living. Jon talks about the film and his charity DMD Pathfinders and what it’s like living with Duchenne as an adult.
https://www.youtube.com/watch?v=AF4D4TyE9NM&t=6s This video from the Duchenne Foundation outlines the clinical progression of Duchenne muscular dystrophy. It explains that for the first few years of a child’s life, there will be no obvious problems, but as the child ages, problems with mobility will start to appear. Find out about the nine main types of muscular dystrophy.
Engagement in physical activity can increase the sense of self-worth and belonging to a group, and can help form peer relationships in children with Duchenne muscular dystrophy (MD), according to a study published in the Journal of Child Neurology.
A Duchenne muscular dystrophy (DMD) patient who is now in his 50s gained the notice of researchers, who say his case could illustrate the benefits of noninvasive mechanical ventilation in patients with well-maintained cardiac function. It is the first report of a patient living into his sixth decade. The report, “New Survival…
Anyone with a chronic illness will testify that they spend a lot of time in the doctor’s office having blood work done. Which means getting pricked with a lot of needles, which can sometimes take two or three (or more) attempts to find a compliant vein. Here are three different types…
Yale New Haven Children’s Hospital’s (YNHCH) Muscular Dystrophy Program has been named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization dedicated to ending Duchenne muscular dystrophy (DMD). PPMD’s Certified Duchenne Care Center Program, which was started in 2014, supports standardized, comprehensive…
The New Jersey Institute of Technology (NJIT) and Talem Technologies will explore the potential of robotic technology to assist people living with Duchenne muscular dystrophy (DMD), using a $600,000 grant awarded by Parent Project Muscular Dystrophy (PPMD). The two-year project is titled “Investigation of the Community Use…
The European Commission has granted Orphan Drug Designation to Benitec Biopharma’s BB-301, an investigational treatment for oculopharyngeal muscular dystrophy (OPMD). The decision represents a major advance for OPMD, a rare congenital myopathy, for which the currently used therapeutic strategies involve repetitive surgical interventions that have limited effectiveness. Orphan Drug…
According to the National Institutes of Health (NIH) there are more than 30 different types of muscular dystrophy (MD). Here is more information about nine of the most common forms. 1. Duchenne Muscular Dystrophy (DMD) DMD is the most common form of the disease and approximately half of all…
In this 2009 video from the Council for Exceptional Children, 14-year-old Bryan Arnold from Anchorage, Alaska talks about what it’s like living with muscular dystrophy and how important it is to educate other kids about life with a disability. Discover five more inspiring stories about people living…
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