Cycling across Canada to cure DMD

What’s it like to live with DMD? As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death in your twenties? As a sibling, relative or friend, to face mourning your loss?

The journey is beyond words.

Our Web short documentary series, “Portrait of Duchenne Canada”, will present the experiences of families and children with DMD. You will meet five Canadian families who are taking on the challenges of raising money and leading the way in advocating for access to new treatments. Today, more than ever, it’s time to share their stories. New treatments are on the horizon and families need to be heard to advocate for ways to access them quickly.

 

This is story is about Bruce Babington, who will cycle across Canada in July 2018 to raise funds and awareness for DMD.

 

A radical decision

“I made rather a foolish decision to ride solo across Canada.” 

-Bruce Babington

 

Bruce has made a radical decision to cycle solo across Canada in July 2018. His goal is to help people afflicted with Duchenne muscular dystrophy (DMD). Bruce is an osteopath. About one year ago, he started to treat Anakin Lacasse, a 9-year-old boy with DMD.  It was the first time that Bruce had encountered a patient with this condition. Anakin was rapidly losing muscle strength, and Bruce quickly became aware of his patient’s reality. Then, he learned about Anakin’s mother’s involvement in La Fondation La Force.

Bruce was so moved that he made up his mind, just like that, to do something to help. So, in July 2018, he’s taking one month off work to cycle an average of 200 km/day between Mont-Tremblant, QC, and Vancouver, BC, in 24 days.

 

First impressions

  • “When I first met Anakin, I was very inspired by him.”
  • “It’s very clear that there’s no quick fix in this instance.”
  • “I wanted to cycle across Canada, so why not do that for La Fondation La Force?”

The overriding challenge

Jacques Tremblay, medical researcher (translation): “The main challenge in trying to develop therapies for rare diseases is getting funding to do the research. The direct impact of foundations, such as La Force is that, firstly, they help spread awareness of this disease to the general public. They raise funds that are essential to get preliminary results and then be able to go after larger grants from government-dependent organizations. If we apply for grant applications to those organisations without preliminary results, basically, our chances of having a grant are zero.”

Bruce Babington: “The challenges I have in a 24-day period are nothing like the challenges Anakin is going to have every single day of his life. I try to do as much as I can to help promote La Fondation La Force.”

 

How will cycling across Canada help the DMD community?

  • We are running a fundraising campaign: “Bruce Across Canada”. La Fondation La Force will award all “Bruce across Canada” funds to the most promising Canadian research.
  • We want to give a voice to the Canadian DMD community. Bruce’s endurance challenge is about starting a conversation on access to new treatments in Canada. Two new treatments for DMD are approved elsewhere in the world. Many other treatments are in the final phase of clinical trials. Canada has no framework to review new therapies for rare diseases quickly and efficiently, and the reimbursement process for such treatments is incredibly cumbersome. Add your voice to our conversation. Be a change maker.
  • Help us to ensure that a whole generation of children and young adults with DMD can access new treatments. It’s time to rise to the challenge!

 

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 in order to access new treatments quickly.

 

Our part is to tell their story. Sharing these stories is one step forward towards the cure.

Donate to “Bruce across Canada” Donate here. 

We invite you to share this story with your community.

Donate to our organisation, so we can continue to help the DMD community to get closer to treatment. Donate here.

 

For more information:

About DMD: Here

About “Bruce across Canada” Here

About reimbursement of drug costs: Here

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