In Testimonial

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. At this time, 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 treatments is extremely important. It will help children like Victor access the new treatments rapidly before the disease has evolved to much.

An excellent way to get everybody to care about Duchenne is by sharing your “words of wisdom.”

 


And if art became a cure?

This text was written by Jean-Philippe Morand, which was initially published in the group “Clan Morand” adapted for the La Force blog.

 

 

JP: “Shortly after it was announced in 2011, that my son Victor, then 5, had a degenerative—and especially—incurable disease, I decided to fight against Duchenne muscular dystrophy (DMD)). This disease that afflicts Victor and thousands of others was not going to take over my family’s life.”

 

Jean-Philippe, a sportsman by nature, set up Dystrospin. This fundraising activity, having seen six previous editions, consisted of 10 hours of “spinning” with 500 participants. Jean-Philippe also ran marathons and drove hundreds of kilometers with Victor, his son, to show him that anything is possible. This allowed them to collect over $ 100k for the DMD cause and research.

 

The “Clan Morand”

Victor is now 13 years old, and his brother Vincent is 11 years old. The two brothers wanted to get involved in the cause of research for Duchenne muscular dystrophy, each in their way. The Morand Clan was born. Vincent will participate in sporting events with Jean-Philippe and Victor will contribute to the cause with art.

Victor is an artist in the making, and he already produces beautiful paintings. Many people around him have already placed orders; Vic’Art’s paintings are exhibited at home and friends’ houses. He’s passionate about it! He wants to make a career out of it and maybe make a living from his art one day.

 

 

And if his art could allow him to find a cure for his own illness? Clan Morand is Victor’s art and sport serving the DMD cause.

Feel free to contact Victor via the Facebook page (here) and place your order at Vic’Art! For each canvas sold, the buyer is invited to donate the same amount to the La Force Foundation.

 

Join the fight!

Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research requires funding.

For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.

 

Sharing our stories is a step towards healing

We invite you to share this story in your community

Donate to our organization here so we can help the DMD community to be heard.

 

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We thank the Morand family for their involvement in the DMD community, and for allowing us to publish their story.

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