Dystance4Dystonia Runners Raise Awareness & Research Funds

Racing Toward the Cure with Each Step


For many people living with dystonia, just getting through the day can feel as grueling as running a marathon. Extreme, uncontrollable muscle spasms impede mobility and balance while causing chronic pain and fatigue. DMRF supporters are showing their commitment to the dystonia community by competing in marathons and races across the country to bring visibility to the disorder. Each runner is motivated by a personal connection to dystonia that drives them to donate their time, energy, and legs on behalf of those with dystonia who struggle to move their bodies freely.   

Carrie Siu Butt has completed six half marathons plus a 10-miler this year alone—totaling 90 miles! She has competed in cities across the country: Chicago, Miami, Philadelphia, New York, and more. Since deep brain stimulation dramatically reduced her severe dystonia, Carrie has been dedicated to running on behalf of those with dystonia who can't.

Team DMRF at the TCS New York City Marathon has raised $112,000 since 2013. This year, Mike House ran in honor of a personal training client who has dystonia. Amber Wood ran in honor of her father Charles Foster, who has cervical dystonia and blepharospasm, and mother Virginia Foster who is active in the Greater Washington, DC Dystonia Support Group.

Pat Brogan is racing the Berwick "Run for the Diamonds" 9-miler on Thanksgiving Day and Rehoboth Beach Half Marathon (13.1 miles) on Saturday, December 3. Every donor to his online campaign will have his/her name printed on his jersey to help him push through each race and build awareness. Pat developed dystonia 15 years ago as a result of a hit-and-run collision while he was training for a triathlon.

Helen Capparell is Pat Brogan’s sister-in-law and has been honoring Pat by participating in the Dystance4Dystonia program for four years. For the past two years, she has run multiple races a year in support of the DMRF. In 2016 she ran the Runner's World Hat Trick which is three races in one weekend—a 5K, 10K, and Half Marathon in one weekend. She also completed the Philadelphia Half Marathon, Rehoboth Beach Half Marathon, and the Bahamas Half Marathon.

Jen DeVore has run multiple races on behalf of the DMRF and dystonia community, including the TCS NYC Marathon (twice!) and the Aspire Harrisburg Marathon this November. She has also organized multiple fundraisers on behalf of the DMRF including “dress down” days through her employer. Jen was inspired to support the DMRF through her friendship with a local family and meeting others in the dystonia community through her involvement in the Dystance4Dystonia program.

To support our Dystance4Dystonia runners, and learn more about their stories, visit https://www.dystonia-foundation.org/friends

Accelerating Research & Inspiring Hope

The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.