{"id":59,"date":"2025-03-06T21:30:25","date_gmt":"2025-03-06T21:30:25","guid":{"rendered":"https:\/\/christopherproject.org\/?page_id=59"},"modified":"2025-03-06T23:26:58","modified_gmt":"2025-03-06T23:26:58","slug":"the-christopher-project-perspectives-on-living-with-myotonic-dystrophy","status":"publish","type":"page","link":"https:\/\/christopherproject.org\/","title":{"rendered":"The Christopher Project: Perspectives on living with myotonic dystrophy"},"content":{"rendered":"\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:250px\">\n<figure class=\"wp-block-image size-large is-resized\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"379\" src=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/cropped-cropped-tcp_logo_orange-rgb-1024x379.png\" alt=\"Together we can make a difference\" class=\"wp-image-48\" style=\"width:250px\" srcset=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/cropped-cropped-tcp_logo_orange-rgb-1024x379.png 1024w, https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/cropped-cropped-tcp_logo_orange-rgb-300x111.png 300w, https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/cropped-cropped-tcp_logo_orange-rgb-768x284.png 768w, https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/cropped-cropped-tcp_logo_orange-rgb-1536x568.png 1536w, https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/cropped-cropped-tcp_logo_orange-rgb.png 1824w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"has-medium-font-size\" id=\"OVERVIEW\"><mark style=\"background-color:rgba(0, 0, 0, 0);color:#e05c0d\" class=\"has-inline-color\">OVERVIEW<\/mark><\/p>\n\n\n\n<p class=\"has-text-align-left has-small-font-size\">The Christopher Project is an important research initiative designed to provide insight into the experience of patients and families living with myotonic dystrophy. It is a partnership between national patient advocacy organizations, health care providers, and people living with myotonic dystrophy. The project was designed to complement existing research by asking patients and their families about their <em>own <\/em>experience from their <em>own <\/em>perspective, <em>as experts in their own right<\/em>.<\/p>\n\n\n\n<p class=\"has-small-font-size\">Over 4,000 surveys were distributed to patients covering a broad range of topics. A follow-up survey was then distributed to 1,000 family members\/caregivers to gain additional insight.<\/p>\n\n\n\n<p class=\"has-small-font-size\">Survey responses from over 1,500 individuals were entered into an extensive database for analysis. The results have been compiled into a comprehensive report.<\/p>\n<\/div>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-contrast-3-color has-alpha-channel-opacity has-contrast-3-background-color has-background\"\/>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"has-medium-font-size\" id=\"THE-REPORT\"><mark style=\"background-color:rgba(0, 0, 0, 0);color:#e05c0d\" class=\"has-inline-color\">THE REPORT<\/mark><\/p>\n\n\n\n<p class=\"has-small-font-size\"><em><strong><a href=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/ChristopherProject-CommunityReport-2019.pdf\" data-type=\"attachment\" data-id=\"61\">The Christopher Project Report to the Myotonic Dystrophy Community<\/a><\/strong><\/em> is a valuable source of information. It includes summary findings of the project along with a detailed description of the diagnostic experience, symptoms, daily life challenges, and healthcare experiences of patients and family members\/caregivers.<\/p>\n\n\n\n<p class=\"has-small-font-size\">Full-color printed copies of the 80-page report are available by mail. Please email <a href=\"mailto:support@christopherproject.org\">support@christopherproject.org<\/a> to request your paper copy.<\/p>\n\n\n\n<p class=\"has-small-font-size\">You can also download a PDF copy <a href=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/ChristopherProject-CommunityReport-2019.pdf\" data-type=\"attachment\" data-id=\"61\" target=\"_blank\" rel=\"noreferrer noopener\">here<\/a>.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:300px\"><div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full is-resized\"><img decoding=\"async\" width=\"1024\" height=\"728\" src=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/IMG_1690.png\" alt=\"\" class=\"wp-image-27\" style=\"width:325px\" srcset=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/IMG_1690.png 1024w, https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/IMG_1690-300x213.png 300w, https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/IMG_1690-768x546.png 768w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div><\/div>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-contrast-3-color has-alpha-channel-opacity has-contrast-3-background-color has-background is-style-default\"\/>\n\n\n\n<p class=\"has-medium-font-size\" id=\"JOURNAL-PUBLICATION-AND-DATA-ACCESS\"><mark style=\"background-color:rgba(0, 0, 0, 0);color:#e05c0d\" class=\"has-inline-color\">JOURNAL PUBLICATION AND DATA ACCESS<\/mark><\/p>\n\n\n\n<p class=\"has-small-font-size\">Some of the results of the Christopher Project are published in the scientific journal <em>Muscle &amp; Nerve<\/em>: Hagerman KA, Howe SJ, Heatwole CR; Christopher Project Reference Group. <a href=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/Hagerman_et_al-2019-Muscle__Nerve.pdf\" data-type=\"attachment\" data-id=\"83\" target=\"_blank\" rel=\"noreferrer noopener\">The myotonic dystrophy experience: a North American cross-sectional study<\/a>. Muscle Nerve. 2019 Apr;59(4):457-464. doi: 10.1002\/mus.26420. Epub 2019 Feb 5. PMID: 30677147; PMCID: PMC6590656.<\/p>\n\n\n\n<p class=\"has-small-font-size\">A Data Supplement is available that contains approximately 600 frequency tables summarizing all of the anonymized data. Click <a href=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/ChristopherProject-DataSupplement-2019.pdf\" data-type=\"attachment\" data-id=\"80\" target=\"_blank\" rel=\"noreferrer noopener\">here<\/a> to view the Data Supplement.<\/p>\n\n\n\n<p class=\"has-small-font-size\">Access to raw data for research purposes is available to qualified investigators subject to a review process and execution of a data sharing agreement. Data access inquiries should be directed to the Project Coordinator at <a href=\"mailto:support@christopherproject.org\">support@christopherproject.org<\/a>.<\/p>\n\n\n\n<p class=\"has-small-font-size\">Click <a href=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/ChristopherProject-Patient-Survey-SAMPLE.pdf\" data-type=\"attachment\" data-id=\"82\" target=\"_blank\" rel=\"noreferrer noopener\">here<\/a> to view a reference copy of the original Patient Survey.<\/p>\n\n\n\n<p class=\"has-small-font-size\">Click <a href=\"https:\/\/christopherproject.org\/wp-content\/uploads\/2025\/03\/ChristopherProject-Family-Survey-SAMPLE.pdf\" data-type=\"attachment\" data-id=\"81\" target=\"_blank\" rel=\"noreferrer noopener\">here<\/a> to view a reference copy of the original Family Member\/Caregiver Survey.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-text-color has-contrast-3-color has-alpha-channel-opacity has-contrast-3-background-color has-background is-style-default\"\/>\n\n\n\n<p class=\"has-text-align-center\" id=\"CONTACT-US\"><mark style=\"background-color:rgba(0, 0, 0, 0);color:#e05c0d\" class=\"has-inline-color\">CONTACT US<\/mark><\/p>\n\n\n\n<p class=\"has-text-align-center has-small-font-size\"><strong>Christopher Project Study Coordinator<br><\/strong>The Christopher Project<br>c\/o The Marigold Foundation<br>7515 Flint Road SE<br>Calgary, AB, Canada T2H 1G3<\/p>\n\n\n\n<p class=\"has-text-align-center has-small-font-size\">403 255 4648<br><a href=\"mailto:support@christopherproject.org\">support@christopherproject.org<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>OVERVIEW The Christopher Project is an important research initiative designed to provide insight into the experience of patients and families living with myotonic dystrophy. It is a partnership between national patient advocacy organizations, health care providers, and people living with myotonic dystrophy. The project was designed to complement existing research by asking patients and their &#8230; <a title=\"The Christopher Project: Perspectives on living with myotonic dystrophy\" class=\"read-more\" href=\"https:\/\/christopherproject.org\/\" aria-label=\"Read more about The Christopher Project: Perspectives on living with myotonic dystrophy\">Read more<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-59","page","type-page","status-publish"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>The Christopher Project: Perspectives on living with myotonic dystrophy - The Christopher Project<\/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:\/\/christopherproject.org\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Christopher Project: Perspectives on living with myotonic dystrophy - The Christopher Project\" \/>\n<meta property=\"og:description\" content=\"OVERVIEW The Christopher Project is an important research initiative designed to provide insight into the experience of patients and families living with myotonic dystrophy. 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