It’s done! After completing the SSQ-Marathon Québec-Lévis this Sunday, August 28. Jean-Philippe Morand and his son Victor have cycled and ran a total of 704 KM. The father and son are on a mission to raise awareness about Duchenne. Every effort to raise awareness about this rare and devastating disease will help us facilitate access to new treatments. Hope to cure Duchenne.
Victor was diagnosed with Duchenne
DMD is an incurable and 100% fatal disease. Duchenne muscular dystrophy is a rare genetic disorder that affects mainly boys. The progression of DMD is unforgiving: the body’s muscles gradually weaken, leaving the boys in a wheelchair at the age of 12, with a life expectancy of 20 to 30 years. Today there is hope for DMD, and several new treatments are on the horizon.
Raising funds and awareness to access new treatments
Within the next 5 to 10 years (or even before then), some new treatment options should be on their way to completion. Now, two treatments are approved in the US and Europe, but not yet available in Canada. Therefore, educating people about what Duchenne is and about access to new therapies is extremely important. It will help children like Victor access the latest treatments rapidly before the disease has evolved to much.
Pioneers in the Canadian DMD community
La Force has been associated with “Dystrospin” since 2016. a fundraising event organized by the Morand family for the past four years. A portion of the money raised was invested in the purchase of a suitable wheelchair. It’s because of this kind of generosity that Jean-Philippe can participate in sports events to raise awareness about Duchenne muscular dystrophy and access to new treatments. This year the “Dystrospin” will give the total profit of this event to two Quebec based researchers. Will provide to Dr. Jacques Tremblay’s research on CRISPR-Cas9 and will give to Dr. Jérôme Frenette to his study on Osteoprotegerin.
Support our cause
There’s nothing better than a father’s courage to raise awareness about Duchenne muscular dystrophy. Today there is hope for DMD, and several new treatments are on the horizon. This hope motivates Jean-Philippe to go beyond his limits for his son, but what he does also benefit all children with DMD.
Every effort to raise awareness about this rare and devastating disease will help us facilitate access to new treatments.
We at La Force DMD are proud to support Jean-Philippe Morand and his family.
To learn more:
· La Force & Dystrospin association
