{"id":15939,"date":"2024-08-27T07:00:00","date_gmt":"2024-08-27T11:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=15939"},"modified":"2025-01-31T14:33:26","modified_gmt":"2025-01-31T19:33:26","slug":"raising-voices-for-duchenne","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/raising-voices-for-duchenne\/","title":{"rendered":"Raising Voices for Duchenne"},"content":{"rendered":"\n<p class=\"core-block core-paragraph\">World Duchenne Awareness Day is on Sept. 7. In honor of this year\u2019s theme, <strong>\u201craise your voice for Duchenne\u201d<\/strong>, we are highlighting remarkable individuals in the Duchenne community who are doing just that: using their voices to raise awareness of Duchenne, advocating for those living with the condition and inspiring the community to join them in amplifying their voices.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Read on to learn more about their incredible efforts to support the Duchenne community and raise their voices for Duchenne.<\/p>\n\n\n<div  class=\"text-block text-block--standard color-theme--light-blue\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Jessica<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Jessica uses her platform and titles, including Mrs. NY International, to advocate for Duchenne. Her story with Duchenne started in 2004, when she learned that her younger cousin, Tommy, was diagnosed with Duchenne and that she was a Duchenne carrier.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.ptcbio.com\/2023\/11\/21\/jessica-fabus-cheng-takes-the-duchennecan-crown\/\" target=\"\" class=\"dual-cta__button btn btn--primary\">Read Jessica&#039;s story<\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n\n\n<div  class=\"text-block text-block--standard color-theme--white\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Felix<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Felix channels his passion and studies to changing the workplace for people with disabilities. He was four when he was diagnosed with Duchenne. During his time at school, Felix saw how Duchenne affected him, and how inclusive people could, or could not, be.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.ptcbio.com\/2023\/11\/02\/felix-can-improve-workplace-outcomes-for-people-with-disabilities\/\" target=\"\" class=\"dual-cta__button btn btn--primary\">Read Felix&#039;s story<\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n\n\n<div  class=\"text-block text-block--standard color-theme--light-blue\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Darrel<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Darrel, a young man living with Duchenne, creates and posts videos on his YouTube channel about lifestyle and sports, which he says has always been a dream of his. Ahead of the FIPFA World Cup in 2023, Darrel interviewed his friend Tyler about his 20-year career in powerchair football, including playing for <a href=\"https:\/\/www.facebook.com\/powersoccerusa?__cft__%5b0%5d=AZU4IolQr_RMcn4fZkL7VA-KQ8f77RKvvZcouYbJVhKSIYg8yaA8OCe7tChSRL_bOr4ExPM1lw_gJNYDEiMvSC46e5zP4_329vB47A2048RU6QtaJJumoMPnM8KKfo7J15onoPuIX1YWpnKtM8jvaq4uAAGKav6Gs988BBSK48KklUAFeFSkvlXv8b-pq1Spc9QmuA_S9MiqezN4o6O1jAUd&amp;__tn__=-%5dK-R\" target=\"_blank\" rel=\"noopener\">USPSA &#8211; United States Power Soccer Association<\/a>, the impact it has had on his life and his current involvement in the sport. During the World Cup, Darrel also shared match highlights and his favorite moments.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.youtube.com\/watch?v=G3Z87Q72f2U\" target=\"\" class=\"dual-cta__button btn btn--primary\">Listen to Darrel &amp; Tyler&#039;s conversation <\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n\n\n<div  class=\"text-block text-block--standard color-theme--white\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Hulda<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Hulda is a mother of three, caregiver and Duchenne advocate from Iceland. Her life was transformed when her youngest son was diagnosed with Duchenne. To encourage positivity through hard times, Hulda created Dancing for Duchenne.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.ptcbio.com\/2022\/03\/14\/huldas-dancing-for-duchenne-can-bring-joy-and-happiness\/\" target=\"\" class=\"dual-cta__button btn btn--primary\">Read more about Hulda<\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n\n\n<div  class=\"text-block text-block--standard color-theme--light-blue\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Shalom<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Shalom is a writer, advocate and artist with Duchenne. He views Duchenne as a companion and source of inner strength and uses his platform to be a voice not only for people with Duchenne, but also for people with disabilities who are neurodivergent or facing mental health challenges.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.ptcbio.com\/2023\/04\/25\/shaloms-rise-to-duchennecan\/\" target=\"\" class=\"dual-cta__button btn btn--primary\">Learn more about Shalom<\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n\n\n<div  class=\"text-block text-block--standard color-theme--white\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Lizanne<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Lizanne is an aspiring screenwriter living with Duchenne. She aspires to increase recognition for disabled people in the acting and film industries.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.ptcbio.com\/2022\/05\/13\/lizanne-schreur-aspiring-screen-writer-living-with-duchenne\/\" target=\"\" class=\"dual-cta__button btn btn--primary\">Read about Lizanne<\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n\n\n<div  class=\"text-block text-block--standard color-theme--denim-blue\">\n\t\t<div class=\"text-block__wrapper\" >\n\n\t\t\n\t\t\t\t\t<h3 class=\"text-block__heading\">\n\t\t\t\t<span class=\"heading--3\"  data-ptc-fitty=\"\">Get Inspired<\/span>\n\t\t\t<\/h3>\n\t\t\n\t\t<div class=\"text-block__content wysiwyg--decoration wysiwyg--color\">\n\t\t\t<p>Check out more inspiring stories from the Duchenne community on our newsroom.<\/p>\n\t\t<\/div>\n\n\t\t\n\t\t\t<div class=\"dual-cta__ctas dual-cta__ctas--same dual-cta__ctas--center\">\n\n\t\t\t\t\t<a href=\"https:\/\/www.ptcbio.com\/newsroom\/?_therapeutic-area=duchenne-muscular-dystrophy\" target=\"\" class=\"dual-cta__button btn btn--dark-primary\">Read more<\/a>\n\t\t\n\t\t\n\t\t\n\t<\/div>\n\n\t<\/div>\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>World Duchenne Awareness Day is on Sept. 7. In honor of this year\u2019s theme, \u201craise your voice for Duchenne\u201d, we are highlighting remarkable individuals in the Duchenne community who are doing just that: using their voices to raise awareness of Duchenne, advocating for those living with the condition and inspiring the community to join them&hellip;<\/p>\n","protected":false},"author":2,"featured_media":15942,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19],"tags":[],"media-type":[5],"therapeutic-area":[21],"class_list":["post-15939","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community"],"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>Raising Voices for Duchenne - 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\/raising-voices-for-duchenne\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Raising Voices for Duchenne\" \/>\n<meta property=\"og:description\" content=\"World Duchenne Awareness Day is on Sept. 7. In honor of this year\u2019s theme, \u201craise your voice for Duchenne\u201d, we are highlighting remarkable individuals in the Duchenne community who are doing just that: using their voices to raise awareness of Duchenne, advocating for those living with the condition and inspiring the community to join them&hellip;\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ptcbio.com\/posts\/raising-voices-for-duchenne\/\" \/>\n<meta property=\"og:site_name\" content=\"PTC Therapeutics (United States)\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/PTCTherapeutics\" \/>\n<meta property=\"article:published_time\" content=\"2024-08-27T11:00:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-01-31T19:33:26+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2024\/08\/WDAD-roundup.png\" \/>\n\t<meta property=\"og:image:width\" content=\"466\" \/>\n\t<meta property=\"og:image:height\" content=\"262\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"jacy\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@PTCBio\" \/>\n<meta name=\"twitter:site\" content=\"@PTCBio\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"jacy\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/\"},\"author\":{\"name\":\"jacy\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/#\\\/schema\\\/person\\\/57224bb5c2cd0a7886dfd1c249bd5b74\"},\"headline\":\"Raising Voices for Duchenne\",\"datePublished\":\"2024-08-27T11:00:00+00:00\",\"dateModified\":\"2025-01-31T19:33:26+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/\"},\"wordCount\":83,\"publisher\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.ptcbio.com\\\/wp-content\\\/uploads\\\/sites\\\/2\\\/2024\\\/08\\\/WDAD-roundup.png\",\"articleSection\":[\"Rare Disease Community\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/\",\"url\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/\",\"name\":\"Raising Voices for Duchenne - PTC Therapeutics (United States)\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.ptcbio.com\\\/wp-content\\\/uploads\\\/sites\\\/2\\\/2024\\\/08\\\/WDAD-roundup.png\",\"datePublished\":\"2024-08-27T11:00:00+00:00\",\"dateModified\":\"2025-01-31T19:33:26+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#primaryimage\",\"url\":\"https:\\\/\\\/www.ptcbio.com\\\/wp-content\\\/uploads\\\/sites\\\/2\\\/2024\\\/08\\\/WDAD-roundup.png\",\"contentUrl\":\"https:\\\/\\\/www.ptcbio.com\\\/wp-content\\\/uploads\\\/sites\\\/2\\\/2024\\\/08\\\/WDAD-roundup.png\",\"width\":466,\"height\":262,\"caption\":\"Raising Voices for Duchenne\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/raising-voices-for-duchenne\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/www.ptcbio.com\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Raising Voices for Duchenne\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/#website\",\"url\":\"https:\\\/\\\/www.ptcbio.com\\\/\",\"name\":\"PTC Therapeutics, Inc.\",\"description\":\"Translating Science. 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