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Teaming up to take down Duchenne

Research and collaboration are bringing Canadians closer to a cure than ever before. However, many parents fear that access to treatment may come too late for their child.

by Denise Deveau, Sep 6, 2019, > published on Maclean’s

 

 


For Nicola Worsfold and her husband Ed, the day they were told their six-year-old son Owen had Duchenne Muscular Dystrophy (DMD) is one they’ll never forget.

 

Nicola Worsfold – “It was like someone took a huge sledgehammer and knocked us off our feet. We found out that there was nothing we could do because, at the time, there was no cure or medication that could help.”

 

A progressive muscular disorder, DMD is caused by a genetic mutation that prevents the body from producing the structural protein needed to protect muscle cells. The Canadian Neuromuscular Disease Registry estimates that there are less than 800 cases in Canada, with almost all affecting boys.

As it stands today, DMD is fatal. A child with the disorder becomes weaker over time until they succumb to the disease in their early to mid-twenties. It can be inherited or, as with Owen’s diagnosis, the result of a random spontaneous mutation.

 

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