IT’S DONE! 704 KM IN HOPE TO CURE DUCHENNE

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.

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 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.

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 4 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 give to Dr. Jacques Tremblay research on CRISPR-Cas9 and will give to Dr. Jérôme Frenette to his research 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 are proud to support Jean-Philippe Morand and his family.

To learn more:

·         Dystrospin

·         La Force & Dystrospin association 

·         Running chair

·         Research Dr. Jacques Tremblay – CRISPR-CAS9

·         Research on Osteoprotegerin

ANOTHER MARATHON FOR JEAN-PHILIPPE AND VICTOR!

How far would you go for your son? For Jean-Philippe Morand and his son Victor, the answer is 704 KM. The duo completed the Ottawa Marathon in May and “La Randonnée Jimmy Pelletier” in June (620 KM of cycling). This Sunday, August 27, they’re up for another marathon, this time in Québec… The father and son are on a mission to raise awareness about Duchenne Muscular dystrophy.

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 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.

Leading the way for the DMD community

La Fondation La Force has been associated with “Dystrospin” since 2016, a fundraising event organized by the Morand family for the past 4 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.

Support them

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.

If you’re attending the marathon, please encourage them. A group of friends will help the father and son go on the last stretch of the marathon, a very steep hill.

Every effort to raise awareness about this rare and devastating disease will help us facilitate access to new treatments.

We at La Force are proud to support Jean-Philippe Morand and his family.

 

To learn more:

Photo Credit:

PORTRAIT OF DUCHENNE – Ravi’s good life

Ravi Metha

Corporate Development Intern at Muscular Dystrophy UK

In this seventh interview in our “Portrait of Duchenne” series, La Force talks with Ravi Metha. Ravi has a business degree and Corporate Development Intern at Muscular Dystrophy UK. As a 27-year-old with Duchenne, he has a good life. This interview is his word of wisdom for all of us.

 

Ravi is committed to living life to the fullest despite DMD!

He has deep brown eyes that are full of life and determination. He loves to grab a drink in pubs with friends in London… If the place isn’t accessible for wheelchair, it doesn’t matter, because he’ll find a way to get in there. You have to fight to live a normal life when you have Duchenne. He has a message for all of us: either you’re part of the DMD community… or you’re not! To people who are completely healthy but sometimes feel life sucks, o every single one of us with preconceptions about disabled people, o the parents, to the young child, to the young adult with DMD:  

 

“Don’t just give up, never give up, on living a normal life. I’m always saying don’t give up and don’t take no for an answer.”

 

In the video, Ravi Metha answers our questions about living with Duchenne

 

  • Overcoming the challenges of living with DMD

When I was younger there were challenges like getting help during the daytime, getting dressed, personal care, going to school, basically all walks of life. But as I got older I learned to adapt more, I learned, you know, compromise … kind of a big word that you have to get used to, you know, because, sometimes you’re gonna get your way but, you know, other times you have to fight quite a lot to get what you, kind of… need and what is rightfully yours to have. In terms of having… going to a public school, you have to fight for that, going to university you have to fight for that, having the care I need you have to fight for that. So it is a lot about fighting, and so you know, that’s kind of, you know, my daily life, to be honest. But as I said, I’ve got older now, I still have barriers, but, you know, it’s something I don’t think about; I always think about getting past it, you know. I don’t, I’m not gonna be like, seeing there’s no access getting into a pub or a bar doesn’t stop me, I still get in there. But you know I try to live life as full as I can.

                                                              

  • What would you like people without Duchenne to know that would make your life better?

Well, you know, I think what I come across is… they see physical disability so they see me having a mental disability as well. So, you know, there are people, you know, that are quite condescending, quite patronising, because they think: “oh, he’s in a wheelchair, so he must be disabled in every part of him”, so that’s a big barrier for everyone, not just in the UK but everywhere around the world. So I mean, yeah, having people know that your mental capability is still there, even though your physical capability is not the same as everyone else. And also, you know, we’re normal. We’re still normal human beings, I can be in a wheelchair but, you know that shouldn’t affect anything.

 

  • Your words of inspiration for other people with DMD

If there’s a barrier or if there is, like, an issue going somewhere you need to go, don’t just give up, never give up, ‘cause otherwise, you’re going to be the same all the time, you won’t live a normal life. I am always saying ‘don’t give up and don’t take no for an answer’. And, yeah, just, I always, am just in a wheelchair but that is nothing to me; I still feel like I have the same rights as everyone else and that what I fight for.

 

To receive the next interview in our series “Portrait of Duchenne”, please subscribe to our newsletter.

 

 Acknowledgements

We thank Action Duchenne, who received us with open arms to conduct a series of interviews.