Donors:Team Sponsorship Allergan
Robert Sarrasin Jr
Larry Dubill - TCS NYC Marathon
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I am honored to represent the Dystonia Medical Research Foundation at the New York City Marathon this November 2017 and fund raise for a cause that is very personal to me. I have Dystonia and it has affected me daily since I was 14 years old. My form of Dystonia, (Paroxysmal Kinesigenic Choreoathetosis/Dyskinesia) causes varying degrees of full systemic seizures or involuntary muscle contractions. As a performing musician, music teacher, and active athlete, I have learned to treat and manage this condition to allow me to be successful in these performance based activities. Growing up, I had no idea why when I started to move I would have a seizure where many of my muscles would involuntary contract. It would happen up to 100 times per day, and was very difficult to mask in front of the other kids. I continued to perform music, play sports, and try to manage these episodes that would often take me to ground during the most severe ones. Over time, I managed to sense when the attacks were coming, and alter my movements to avoid many of the attacks. In 1994, after several years of being undiagnosed, my wife was taking a carton of milk from the refrigerator and saw on the carton that it was Dystonia awareness week. The symptoms that were listed were exactly what I was experiencing. After an appointment with a neurologist/movement disorder specialist in Buffalo, NY, I was diagnosed and started receiving what I consider life changing treatment. I hope to bring increased awareness to Dystonia and help to raise money for continuing research. I am also dedicating my first marathon to my father (Larry Sr.) who ran many marathons before his untimely passing in 1991.
Larry is a band director at Hamburg High School near Buffalo, NY. He is an active performing percussionist and conductor, and is in his 22nd year of teaching. Larry plays and coaches golf, plays ice hockey, is an active runner, and loves to hike mountain trails. His high school jazz ensembles and bands have toured all over the USA, and have gone on three performing tours to Japan. He and his wife Jackie have four children (ages 15-21). More information may be found at his website LarryDubill.com.
For every donation of $100, you receive a free 2017 Run for Those Who Can't ING NYC Marathon T-shirt.
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The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.