{"id":6581,"date":"2018-05-04T11:31:53","date_gmt":"2018-05-04T11:31:53","guid":{"rendered":"https:\/\/laforcedmd.com\/?p=6581"},"modified":"2022-05-03T18:17:08","modified_gmt":"2022-05-03T18:17:08","slug":"chance-encounter-launched-groundbreaking-dmd-research","status":"publish","type":"post","link":"https:\/\/laforcedmd.com\/en\/chance-encounter-launched-groundbreaking-dmd-research\/","title":{"rendered":"Portrait of Duchenne &#8211; Every action counts!"},"content":{"rendered":"<h3>A chance encounter launched groundbreaking DMD research<\/h3>\n<p>When Max Sedmihradsky was two-years-old, he received the DMD diagnosis. The news was devastating beyond words for his parents Kerry and Andrew. After a moment of profound sadness, Andrew came up with the idea for Max\u2019s Big Ride. Every year he cycles between Ottawa and Hamilton, Ontario, with Max in front of the cargo bike. The ride aims to raise funds and awareness for Duchenne muscular dystrophy.<\/p>\n<p>Andrew works at the University of Toronto, where the researcher Patrick Gunning also works. Andrew took the chance to reach up to him to see if he would do some research for DMD. At that time, Patrick Gunning reached out to his graduate students to start a research on DMD. They found out that the cell they are working on, \u201cStat 3\u201d, plays a decisive role in DMD. A year later, after this chance encounter, the Gunning Group received a $300,000 grant and are performing ground-breaking research for DMD. This is the story of Max\u2019s Big Ride and the Gunning Group.<\/p>\n<p>&nbsp;<\/p>\n<p><iframe loading=\"lazy\" title=\"Portrait of Duchenne  Max&#039;s and Gunning Group\" width=\"1140\" height=\"641\" src=\"https:\/\/www.youtube.com\/embed\/LkF9t1S18I4?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<h3>Quotes from video<\/h3>\n<h4><strong>Magic happened<\/strong><\/h4>\n<blockquote><p><strong>Andrew Sedmihradsky:<\/strong>\u00a0<em>\u201cYou know, it\u2019s the very random kind of thing that happened and the fact that I work in the building where there is a man who potentially could have the cure for Duchenne is tremendous\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<blockquote><p><strong>Kerry Sedmihradsky:<\/strong>\u00a0<em>\u201cPatrick Gunning is a researcher at the University of Toronto where Andrew works. And Andrew attended a talk which mention the research that Patrick was doing and for what he has told me, he is kind of the rock star of researchers at the University of Toronto\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<blockquote><p><strong>Patrick Gunning,\u00a0<\/strong><strong>Associate Professor<\/strong><strong>:<\/strong>\u00a0<em>\u201cWould you be interested in looking at developing drugs for Duchenne?\u2019\u2019 And I said: \u201cWell, we are typically oncology based and I don\u2019t think that the targets that we make drugs for are involved in Duchenne.\u201d I asked my graduated student Yasir to investigate whether STAT proteins in particular were involved in Duchenne.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h4><strong>A ride of hope: Max\u2019s Big Ride<\/strong><\/h4>\n<blockquote><p><strong>Andrew Sedmihradsky:<\/strong>\u00a0<em>\u201cYou know, a few days into it, we just went on a family trip to the museum and I remember in the gift shop seeing a card that said: \u201cFalling down is part of life but getting up is living.\u00a0 It really responded to me, it resonated with me. I think that\u2019s kind of the attitude that we\u2019ve adopted you know, from that point forward. And you know, you have to fight, and we\u2019re determined as a family to do so. To try and beat this.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<blockquote><p><strong>Kerry Sedmihradsky: <\/strong><em>\u201cSo, he worked out the route between Hamilton and Ottawa which is 600 km with Max riding in the front of the Cargo bike and it\u2019s been a really, really positive experience for our family.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h4><strong>Groundbreaking research with the Gunning Group<\/strong><\/h4>\n<blockquote><p><strong>Yassir, Graduated student:<\/strong>\u00a0<em>\u201cIt\u2019s very rare that we get to see what we do have an impact. So yeah, my motivation is, just all the young children that have Duchenne and if I can do anything, you know one percent that I can do to try to push this a little bit more, maybe five years later someone pushes it more and hopefully, we live in a world soon where Duchenne is something that is normal and we can cure it.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h3>Join the fight!<\/h3>\n<p>Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. 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<h5><strong>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.<\/strong><\/h5>\n<p>&nbsp;<\/p>\n<h3>Sharing these stories is one step forward towards the cure.<\/h3>\n<ul>\n<li>We invite you to share this story with your community.<\/li>\n<li>Encourage Bruce\u2019s challenge: to cycle from Quebec to British Columbia in 24 days! Make a donation\u00a0<a href=\"http:\/\/fondationpva.com\/en\/\" rel=\"noopener\">\/<\/a><a href=\"\/?page_id=3528\" target=\"_blank\" rel=\"noopener\">Here<\/a><\/li>\n<li>Donate to our organization, so we can continue to help get closer to treatment.\u00a0\u00a0<a href=\"http:\/\/fondationpva.com\/en\/\" rel=\"noopener\">\/<\/a><a href=\"\/?page_id=3528\" target=\"_blank\" rel=\"noopener\">Here<\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<h3>For more information:<\/h3>\n<p>About Max\u2019s Big Ride:\u00a0\u00a0<a href=\"https:\/\/www.maxsbigride.com\/\" target=\"_blank\" rel=\"noopener\">Max\u2019s Big Ride<\/a>\u00a0<a href=\"https:\/\/www.maxsbigride.com\/\" target=\"_blank\" rel=\"noopener\">\/ Here<\/a><\/p>\n<p>About the Gunning group:\u00a0<a href=\"http:\/\/www.gunninggroup.ca\/home\" target=\"_blank\" rel=\"noopener\">The Gunning Group<\/a>\u00a0\u00a0<a href=\"http:\/\/www.gunninggroup.ca\/home\">\/<\/a>\u00a0<a href=\"http:\/\/www.gunninggroup.ca\/home\">Here<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A chance encounter launched groundbreaking DMD research When Max Sedmihradsky was two-years-old, he received the DMD diagnosis. The news was devastating beyond words for his parents Kerry and Andrew. After a moment of profound sadness, Andrew came up with the idea for Max\u2019s Big Ride. Every year he cycles between Ottawa and Hamilton, Ontario, with [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":6591,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17,20],"tags":[],"class_list":["post-6581","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-research","category-testimonial"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Portrait of Duchenne - Every action counts! - La Force dmd<\/title>\n<meta name=\"description\" content=\"This is the story of how a chance meeting with a scientist leads to the launch of an innovative research!\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/laforcedmd.com\/en\/chance-encounter-launched-groundbreaking-dmd-research\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Portrait of Duchenne - Every action counts! 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