Mapping a solution to Muscular Dystrophy

The Muscular Dystrophy Australia (MDA) building is just seven minutes' walk from the Murdoch Children's Research Institute. Maps of Victoria and New South Wales line the office, speckled with small, coloured flags representing an individual and their community affected by muscular dystrophy.

Boris Struk first founded MDA in 1984 after learning that his three-year-old son, Ryan, had the most common and severe form of muscular dystrophic disease, Duchenne Muscular Dystrophy (DMD). Muscular dystrophies are a group of genetically inherited diseases causing weakness and degeneration of the skeletal muscles. Most children with DMD lose their ability to walk by their mid-teens. Worsening heart and lung problems cause life-threatening complications and eventually death, usually before 30 years of age.

Boris describes MDA as a refuge for families left devastated after a muscular dystrophy diagnosis. He is a strong believer that "people with muscular dystrophies need access to two things that MDA is able to offer: information and support 'in the now' and hope through research for a timely solution". To that end, MDA has been supporting MCRI for 15 years, including through the generous donation of more than $1.5 million to support research into muscular diseases, including DMD.

MDA is also helping support the next generation of leading researchers, including Dr Chantal Coles, who works closely with the Muscular Disease Group, co-led by MCRI's Director, Professor Kathryn North, and Associate Professor Peter Houweling. Dr Coles is conducting several exciting projects, including using patient stem cells to grow muscle tissues that can be "exercised" in a dish and screened with new and existing drug compounds using the Stafford Fox Drug Screening Platform. This research will enable us to better understand why muscular dystrophies occur and test drugs that may be able to stop muscular dystrophy in its tracks.

Boris recently retired after 33 years of leading MDA. Boris's most endearing features have always been a combination of pride, humbleness, and passion for his cause. Sadly, Ryan passed away on October 9, 2020. His legacy will live on through MDA.

MCRI pays tribute to both Boris and Ryan for their contribution towards our research, and for their ongoing support of MD communities both in Australia and beyond. Our partnership brings hope for finding better therapies for patients diagnosed with muscular dystrophies and eventually, a cure.