Portrait of Duchenne – Victor’s unforgettable experience!

 

Giving an incredible experience to your child

Victor Morand, 11 years old: “I like it because they give you a lot of encouragement and it’s one of the only activities I can do with my dad.”

It took about two years of going back and forward to doctor appointments before the Morand family got a DMD diagnosis. Like every other parent, Jean-Philippe Morand turned to the Internet looking for answers. He understood…  the best hope for Victor was research. Exactly one year after receiving the diagnosis, they started a fundraiser event called Dystrospin.

They’ve raised thousands of dollars for the past four years, but Jean-Philippe wanted to do more so he started running and cycling with Victor which made them on top for raising funds awareness for DMD. In 2017, the father and son travelled over 600 km; they ran two marathons (Québec and Ottawa) and accomplished a track cycling of 650 km called La randonnée Jimmy Pelletier. This is the inspiring story of Jean-Philippe and Victor.

 

 

Quotes from the video

The hope lies in the research

Jean-Phillipe Morand: “Hope lies in research. A few weeks after I learned about Victor, I thought: well, after going through all the information on the internet about muscular dystrophy, I realized that my only hope lies in research. So, from there, we started exactly a year after the diagnosis the Dystrospin for collecting money to give it to research so we can find a cure to help Victor.”

 

The importance of their actions for funding research

Jérôme Frenette, Professor: “People alike Jean-Philippe who put so much energy in developing recruitment projects, it really matters. Finally, it puts a face on those affected by the disease, we now know why we wake up to work. We have children…I have pictures of many children at my office, I put them in the laboratory. People like the foundation give us a real picture of the tangible reality about everyday work that you tend to lose sight of when you work in a laboratory. Foundations are helpful, they give us credibility when we discuss with granting agencies. I think that for them, we also put a face on the children concerned, on people and on the importance of research in those fields.”

 

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 needs 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.

 

Bruce Babington, our own La Force athlete, will cycle across Canada in July 2018 to raise funds and awareness for DMD. Our part is to tell their story.

 

Sharing these stories is one step forward towards the cure

  • We invite you to share this story with your community.
  • Encourage Bruce’s challenge: to cycle from Quebec to British Columbia in 24 days! Donate / here
  • Make a donation to our organization, so we can continue to help get closer to treatment. Donate / here

 

For more information:

Jean-Philippe Morand event Distrospin/ here

La Randonnée Jimmy Pelletier/ here

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