{"id":6210,"date":"2018-02-20T11:57:54","date_gmt":"2018-02-20T11:57:54","guid":{"rendered":"https:\/\/laforcedmd.com\/?p=6210"},"modified":"2022-05-03T18:17:50","modified_gmt":"2022-05-03T18:17:50","slug":"portrait-of-duchenne-canada-cycling-across-canada-to-cure-dmd","status":"publish","type":"post","link":"https:\/\/laforcedmd.com\/en\/portrait-of-duchenne-canada-cycling-across-canada-to-cure-dmd\/","title":{"rendered":"Cycling across Canada to cure DMD"},"content":{"rendered":"<p><strong>What\u2019s it like to live with DMD?<\/strong><\/p>\n<p><strong>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?<\/strong><\/p>\n<p><strong>The journey is beyond words.<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p>Our Web short documentary series, \u201cPortrait of Duchenne Canada,\u201d 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\u2019s 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.<\/p>\n<p>&nbsp;<\/p>\n<h3>This is the story about Bruce Babington, who will cycle across Canada in July 2018 to raise funds and awareness for DMD.<\/h3>\n<p>&nbsp;<\/p>\n<h3>A radical decision<\/h3>\n<blockquote>\n<p style=\"text-align: center;\">\u201cI made rather a foolish decision to ride solo across Canada.\u201d<strong>\u00a0<\/strong><\/p>\n<p style=\"text-align: center;\">-Bruce Babington<\/p>\n<\/blockquote>\n<p>&nbsp;<\/p>\n<p>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. \u00a0It 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\u2019s reality. Then, he learned about Anakin\u2019s mother\u2019s involvement in La Fondation La Force.<\/p>\n<p>Bruce was so moved that he made up his mind, just like that, to do something to help. So, in July 2018, he\u2019s taking one month off work to cycle an average of 200 km\/day between Mont-Tremblant, QC, and Vancouver, BC, in 24 days.<\/p>\n<p>&nbsp;<\/p>\n<p><iframe loading=\"lazy\" title=\"Portrait of Duchenne Canada : : Bruce and Anakin\" width=\"1140\" height=\"641\" src=\"https:\/\/www.youtube.com\/embed\/gpl-DzTX3-Y?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<h4>First impressions<\/h4>\n<ul>\n<li>\u201cWhen I first met Anakin, I was very inspired by him.\u201d<\/li>\n<li>\u201cIt\u2019s very clear that there\u2019s no quick fix in this instance.\u201d<\/li>\n<li>\u201cI wanted to cycle across Canada, so why not do that for La Fondation La Force?\u201d<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<h4>The overriding challenge<\/h4>\n<blockquote><p><strong>Jacques Tremblay, medical researcher (translation)<\/strong>: <span style=\"color: #999999;\"><em>\u201cThe 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.\u201d<\/em><\/span><\/p>\n<p><strong>Bruce Babington: <\/strong><em><span style=\"color: #999999;\">\u201cThe 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.\u201d<\/span><\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h4>How will cycling across Canada help the DMD community?<\/h4>\n<ul>\n<li>We are running a fundraising campaign: \u201cBruce Across Canada.\u201d La Fondation La Force will award all \u201c<strong>Bruce across Canada<\/strong>\u201d funds to the most promising Canadian research.<\/li>\n<li>We want to give a voice to the Canadian DMD community. Bruce\u2019s 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.<\/li>\n<li>Help us to ensure that a whole generation of children and young adults with DMD can access new treatments. It\u2019s time to rise to the challenge!<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<h4>Join the fight!<\/h4>\n<p>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.<\/p>\n<p>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.<\/p>\n<p>&nbsp;<\/p>\n<h4 style=\"text-align: left;\">Our part is to tell their story. Sharing these stories is one step forward towards the cure.<\/h4>\n<p style=\"text-align: left;\">Donate to \u201cBruce across Canada\u201d\u00a0<strong><a href=\"\/?page_id=3528\" rel=\"noopener\">Donate here.\u00a0<\/a><\/strong><\/p>\n<h4 style=\"text-align: left;\">We invite you to share this story with your community.<\/h4>\n<p style=\"text-align: left;\">Donate to our organization, so we can continue to help the DMD community to get closer to treatment.\u00a0<strong><a href=\"\/?page_id=3709\" rel=\"noopener\">Donate here.<\/a><\/strong><\/p>\n<p style=\"text-align: left;\"><strong>\u00a0<\/strong><\/p>\n<h4 style=\"text-align: left;\"><\/h4>\n<h4><strong>For more information:<\/strong><\/h4>\n<p>About DMD: <a href=\"\/?page_id=3388\" rel=\"noopener\">Here<\/a><\/p>\n<p>About \u201cBruce across Canada\u201d <a href=\"\/?p=6038\" rel=\"noopener\">Here<\/a><\/p>\n<p>About reimbursement of drug costs: <a href=\"\/?page_id=3498\" rel=\"noopener\">Here<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>What\u2019s 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. &nbsp; Our Web short [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":6216,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12,18],"tags":[],"class_list":["post-6210","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-treatments"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Cycling across Canada to cure Duchenne<\/title>\n<meta name=\"description\" content=\"Our web short docs series, \u201cPortrait of Duchenne Canada\u201d, present families with DMD.This Bruce will cycle across Canada to help his patient Anakin.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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