Today is Rare Disease Day, a day to raise awareness for the 300 million people living with a rare disease worldwide. rarediseaseday defeatduchenne – healthing_ca RareDiseaseDay RareDiseases ShareYourColours LightUpForRare Duchennemusculardystrophy
The federal government offers employees top-notch insurance. If that kind of drug coverage is good for them, why not for the rest of us?DMD usually starts with weakened hip, pelvic and shoulder muscles, which then affects the skeletal muscles. By early teens, the heart and respiratory muscles weaken and patients may need a wheelchair and respiratory aids. There is no cure, and life expectancy is short — about 30 years old.
“We modified our daily life to his comfort level,” says Patricia. “Before, if he had pain or cramps we just thought it was growing pains and we would push on. We no longer push those boundaries, and he’s been doing really well since.”After much research on what progress was being made in Canada, and finding very little, Keven came across an organization called
In fact, Cure Rare Disease recently announced a three-year collaborative research project with Toronto’s Hospital for Sick Children, with US$500,000 funding from Cure Rare Disease. The goal is to build on the organization’s existing research to develop a CRISPR/Cas9-based treatment to correct gene duplications that cause Duchenne by restoring full-length dystrophin — which is critical to muscle strength and function.
“My mom had three brothers who had the disease, and back then, in the ’70s and ’80s, there was nothing you could do about it,” he says. “Unfortunately, they succumbed to the disease years ago.” The diagnosis didn’t deter young Jesse from living a full life, however. He was active in sports, the culinary arts, the school choir, and, in high school, in business and commerce, where he joined Junior Achievement.
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