{"id":12716,"date":"2023-07-12T07:00:00","date_gmt":"2023-07-12T11:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=12716"},"modified":"2025-01-08T16:48:21","modified_gmt":"2025-01-08T21:48:21","slug":"25-remarkable-stories-riding-through-roadblocks","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/25-remarkable-stories-riding-through-roadblocks\/","title":{"rendered":"Riding Through Roadblocks"},"content":{"rendered":"<div  class=\"title-text\">\n\t<h3 class=\"title-text__heading heading--5 title-text--small\">\n\t<span class=\"title-text__pseudo title-text__pseudo--before\" style=\"background-color: var( --wp--preset--color--violet );\"><\/span>\n\t<span class=\"title-text__text\">Kyle Bryant, rideATAXIA Founder and Director<\/span>\n\t<span class=\"title-text__pseudo title-text__pseudo--after\" style=\"background-color: var( --wp--preset--color--violet );\"><\/span>\n<\/h3>\n<\/div>\n\n\n\n<p class=\"core-block core-paragraph\">When Kyle Bryant first started riding his recumbent trike, he had no idea he\u2019d end up rallying a community to raise $11 million dollars for Friedreich&#8217;s ataxia (FA) research \u2013 he just wanted to make it down the block.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Ultimately what drove Kyle, Director of rideATAXIA at FARA and Cohost of the <em>Two Disabled Dudes<\/em> podcast, to a recumbent trike in the first place was his FA diagnosis at age 17. FA is a rare and debilitating, progressive genetic disease. The progressive loss of coordination and muscle strength caused by FA leads to muscle incapacitation and the eventual full-time use of a wheelchair. There are currently no approved disease-modifying therapies.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">After Kyle\u2019s diagnosis, he had to redefine his vision of the future and how he fit into society, as many people with a rare disease must do. He attended the University of California, Davis and left with a degree in Civil Engineering, then worked for five years as an engineer. All the while living with FA and dealing with its unrelenting progression.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Over time, Kyle began losing the ability to participate in the sports he loved: baseball, basketball, golf, skiing. When it came time to give up his upright bicycle, he put his foot down and said, \u201cThat\u2019s enough. That\u2019s enough of losing all these sports and activities that mean so much to me.\u201d<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">In finding a way to keep riding \u2013 by using a recumbent trike \u2013 he found the way to approach the roadblock that was his FA diagnosis. Kyle loved the freedom that came with riding his recumbent trike, and so he started riding, farther and farther distances, pushing himself to achieve one goal, then another. After completing a century ride \u2013 cycling 100 miles in one day \u2013 he found his calling: use cycling to empower others and do more for the FA community.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Kyle in turn founded rideATAXIA, and his first initiative was a 2,500-mile bike ride from San Diego to Memphis with his father on a bike and his mother driving their travel trailer. Two years later, Kyle was hired by Friedreich\u2019s Ataxia Research Alliance (FARA) as Spokesperson and rideATAXIA Director. Kyle and his FARA teammates built a nation-wide, family friendly series of bike rides for people of all abilities. Since its founding in 2007, rideATAXIA has raised more than $11 million dollars in support of FA research grants.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">In addition to acting as director of rideATAXIA, Kyle works with various stakeholders, including peers living with FA, academic investigators, government agencies, other advocacy groups, and industry partners, to educate about FA and build connections with the patient community. In his view, some of the community\u2019s key roles are to actively raise funds and participate in research. &nbsp;He also sees tremendous value in impactful partnerships between the patient and research communities \u2013 like the partnership between FARA and PTC to find a potential treatment. Kyle advocates for the importance of patient groups working with industry partners, to ensure that patient voices are included and reflected in the drug development process.<\/p>\n\n\n\n<div  class=\"quote-block quote-block--image color-theme--white\">\n\n\t\t\t<img decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/04\/KyleQuote-342x429.jpg\" class=\"quote-block__image\" alt=\"Kyle Bryant\"\/>\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--white\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tFor those of you at PTC, please remember this: when your day feels long and challenging, there is nothing more important you could be doing with your life than creating treatments for people with rare diseases.\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--name\">\n\t\t\t\tKyle Bryant\t\t\t<\/cite>\n\t\t\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--title\">\n\t\t\t\trideATAXIA Founder and Director\t\t\t<\/cite>\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\">In 2021, Kyle joined PTC at its ribbon cutting ceremony for PTC\u2019s Hopewell Gene Therapy Technical Center of Excellence. He shared his inspiring story from that very first bike ride to the national rideATAXIA initiative. Kyle also shared his excitement around the opening of Hopewell, and the hope that the future of gene therapy represents for FA patients and others in the rare disease community.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">In the meantime, Kyle keeps cycling and bringing more and more people along for the ride.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Through recumbent trike riding, Kyle was able to approach the roadblock that was his FA diagnosis.<\/p>\n","protected":false},"author":2,"featured_media":16122,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,60],"tags":[],"media-type":[5],"therapeutic-area":[23],"class_list":["post-12716","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community","category-rare-journeys"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.5 (Yoast SEO v27.5) - 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