September 18th – Press Release from the Dystonia Medical Foundation….


Contact: Debbie Durrer, 312-447-5098

San Francisco Woman’s Fifth Half Marathon Retires from Inspirational Running Career

Despite living with chronic neurological disorder, Carrie Siu Butt has finished over 15 races for Dystance4Dystonia

San Francisco, CA (September 9, 2013) – The Dystonia Medical Foundation (DMRF) is proud to cheer on Dystance4Dystonia runner Carrie Siu Butt in her fifth and final half marathon this November 3rd in San Francisco at the US half marathon. Dystonia is a neurological disorder, and Carrie has served for years as a tireless inspiration for the dystonia community through her advocacy and passion for running. Diagnosed at age 12, she underwent Deep Brain Stimulation (DBS) in 2006 and has since trained for and participated in over 15 races, including a full marathon.

Carrie was diagnosed with dystonia during puberty, too young to fully understand that she would gradually lose control of her body as the years went on. But as she got older, the symptoms worsened significantly. “I was in my 20s and realized I couldn’t walk as fast as others on business trips or I was self-conscious that I was always last in a group,” she says. Eventually, it became increasingly difficult to walk at all or even put on her shoes. She began to fear life in a wheelchair.

The decision to undergo DBS was challenging. She’d seen the strain it put on her family after her sister, who also has dystonia, underwent the procedure. “It had to feel like the right time for me,” she said. “By the time I turned 30, I was facing a future of being in a wheelchair and decided to live my life fearlessly and have DBS.”

Six weeks after brain surgery, Carrie began to walk. One year after surgery, she ran her first 10k. Since then, the miles have rolled by.

In 2011, Carrie ran her first marathon in Chicago to honor her sister Suzie. It was a grueling seven hour feat – but her story inspired many. One woman who had never run a marathon before wrote to the DMRF pledging to “dedicate the next year-and-one month of my life to preparing for my first marathon in Carrie and her sister’s honor.”

After an admirable running career she never thought she’d have, Carrie made the difficult decision to retire after this November’s race. “As hard as it is for me to give up running half marathons, I know that I have run for all of those that can’t,” Carrie says. “I have inspired those that thought they couldn’t walk or run a mile and did.”

“My lasting message would be don’t ever give up, don’t fight the dystonia, accept it as your super power – your power to be different and be able to do different things that other able bodied people can’t.”

Dystonia is a neurological movement disorder that strikes children as young as eight and may affect multiple generations in a single family. Symptoms include uncontrollable muscle spasms that twist the body into involuntary movements. Dystonia affects approximately 300,000 people in North America, making it the third most common movement disorder after essential tremor and Parkinson’s disease.

The Dystonia Medical Research Foundation (DMRF) is dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families. The DMRF can be reached at 800-377-3978 or 


2 thoughts on “September 18th – Press Release from the Dystonia Medical Foundation….

  1. You are very welcome! It’s the least I can do with my good fortune..runcarrierun won’t go away, it just may be triathalons, learning how to ski, learning how to use my super powers to the best extent possible.

  2. Carrie, I’m thrilled to join in a long-earned celebration of all you’ve achieved for the cause of Dystonia awareness! Wishing you the best of luck with your final half marathon. You’re an example of all we can accomplish when we muster our determination and dare to dream. Thank you for running for all of us! -Pamela- PS: I’ve shared your inspiration on Facebook!

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