{"id":11713,"date":"2016-02-11T04:28:00","date_gmt":"2016-02-11T12:28:00","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11713"},"modified":"2025-12-30T04:29:06","modified_gmt":"2025-12-30T12:29:06","slug":"every-body-counts-christina-sterck","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/every-body-counts-christina-sterck\/","title":{"rendered":"Every Body Counts: Christina Sterck"},"content":{"rendered":"
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Christina has been in several DM studies. \u201cI first got involved in a study because of my dad, he asked me to get involved,\u201d says Christina Sterck, a 39-year-old middle school science teacher in Elkins, W. Va. \u201cNow I\u2019m doing it because I\u2019m a science teacher. I\u2019m a naturally curious individual. The more we can learn about myotonic dystrophy, the more other people can be helped.\u201d<\/div>\n<\/div>\n
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Christina is now in a study supported by Myotonic and others to determine the best ways to measure the effects of type 1 myotonic dystrophy (DM1). It’s\u00a0being conducted at several U.S. sites that are part of the Myotonic-sponsored\u00a0Myotonic Dystrophy Clinical Research Network (DMCRN)<\/a>. (For details about this\u00a0Multicenter Observational Study of Myotonic Dystrophy Type 1 and other studies, see the\u00a0Myotonic Study & Trial Resource Center<\/a>\u00a0and select the Current Studies and\u00a0Trials tab.)<\/p>\n

Christina originally participated in an earlier stage of this study at the University of Rochester study site in upstate New York and is now in a later stage of the study through the site at the National Institutes of Health (NIH) in Bethesda,\u00a0MD.<\/p>\n

\u201cThe more we can look at someone who is very able-bodied and watch the changes that occur over a period of time, the more we\u2019re going to learn,\u201d she says. \u201cParticipation in research has helped me learn more about my disease and how the condition may shape my future. \u00a0It\u2019s a neat experience if you\u2019re\u00a0open it.\u201d<\/p>\n

Christina herself is still able-bodied and very active, surprising the investigators with requests to use a stationary bicycle and go on walks while participating in the research at the University of Rochester. But her father, who had DM1 and died four years ago, was seriously affected, retiring from his shipping and receiving job on disability after muscle weakness and daytime sleepiness made it impossible for him to continue\u00a0working.<\/p>\n

During her visits to NIH, Christina has undergone muscle biopsies, strength testing and other measurements, all of which have intrigued her. \u201cThe doctors find it hilarious that I am so competitive. I always try to beat my previous time on the tests,\u201d\u00a0she\u00a0says.<\/p>\n

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She hasn\u2019t found study participation difficult and has enjoyed the travel and hotel stays. \u201cI\u2019m a big traveler,\u201d she says. \u201cI think everything is fun.\u201d The food at NIH is good, and the dietary staff accommodates lactose and gluten issues, she adds, but the cookies at the hotel where she stays are \u201cawesome \u2013 hot, gourmet chocolate\u00a0chip.\u201d<\/p>\n

Christina has particularly enjoyed getting to know study coordinator Jeanne Dekdebrun in Rochester and now study coordinator Hirity Shimellis in Bethesda, MD. \u201cThe relationship is really positive,\u201d she says. \u201cWe text back and forth, and she walks me around while I\u2019m there and checks in with me.\u201d All questions have been thoroughly answered, even those Christina asked regarding how NIH handled a patient with Ebola\u00a0virus.<\/p>\n

Her advice to people with DM who are considering joining a study is that they \u201cget specific information and read it over to be sure it\u2019s the kind of study you want to participate in.\u201d She herself isn\u2019t interested in a drug study, but she knows there are plenty of people who\u00a0are.<\/p>\n

\u201cI\u2019m a teacher,\u201d Christina says. \u201cThe more I can encourage people, the more I feel I am achieving what God has put me on this planet for. Every day, even if I\u2019ve had a hard day, I know why I\u2019m on this earth. I know my purpose here is to educate\u00a0people.\u201d<\/p>\n

Join a registry, or sign up for a study or trial\u00a0today.<\/a><\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11714,"template":"","class_list":["post-11713","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11713","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/11714"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11713"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}