{"id":17631,"date":"2025-09-25T09:00:00","date_gmt":"2025-09-25T13:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=17631"},"modified":"2025-09-19T15:21:08","modified_gmt":"2025-09-19T19:21:08","slug":"the-importance-of-sharing-your-story","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/the-importance-of-sharing-your-story\/","title":{"rendered":"The Importance of Sharing Your Story"},"content":{"rendered":"\n<p class=\"core-block core-paragraph\">For Sam, publishing his first book was nerve-wracking \u2013 it chronicled his Friedreich\u2019s ataxia (FA) diagnosis and was therefore very personal. He wasn\u2019t sure what people would think, but he was pleased with the positive reception of his book.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Sam is a passionate writer and has since published five more books. In this video, Sam shares how his life changed after his diagnosis, what it was like to publish a book about his diagnosis journey, and the importance of sharing your story \u2013 along with his message for the FA community.<\/p>\n\n\n\n<div style=\"padding:56.25% 0 0 0;position:relative;\"><iframe src=\"https:\/\/player.vimeo.com\/video\/1120247827?h=85ffc010cd&amp;badge=0&amp;autopause=0&amp;player_id=0&amp;app_id=58479\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" style=\"position:absolute;top:0;left:0;width:100%;height:100%;\" title=\"Rare Journeys | Sam's FA Testimonial\"><\/iframe><\/div><script src=\"https:\/\/player.vimeo.com\/api\/player.js\"><\/script>\n","protected":false},"excerpt":{"rendered":"<p>For Sam, publishing his first book was nerve-wracking \u2013 it chronicled his Friedreich\u2019s ataxia (FA) diagnosis and was therefore very personal. He wasn\u2019t sure what people would think, but he was pleased with the positive reception of his book. Sam is a passionate writer and has since published five more books. In this video, Sam&hellip;<\/p>\n","protected":false},"author":14,"featured_media":17633,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,60],"tags":[],"media-type":[5,12],"therapeutic-area":[23],"class_list":["post-17631","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) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>The Importance of Sharing Your Story - PTC Therapeutics (United States)<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ptcbio.com\/posts\/the-importance-of-sharing-your-story\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Importance of Sharing Your Story\" \/>\n<meta property=\"og:description\" content=\"For Sam, publishing his first book was nerve-wracking \u2013 it chronicled his Friedreich\u2019s ataxia (FA) diagnosis and was therefore very personal. He wasn\u2019t sure what people would think, but he was pleased with the positive reception of his book. Sam is a passionate writer and has since published five more books. 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