Ben Beach Runs 50th Boston Marathon despite Dystonia

DMRF Member Holds World Record for Consecutive Boston Marathons

4/14/17

Ben Beach of Bethesda, Maryland will line up for the 50th consecutive year to run the Boston Marathon. He has already earned the record for the most consecutive Boston Marathon races in history. He has competed over a dozen times since developing focal leg dystonia, a disabling neurological disorder that challenges his balance and gait.

Members of the dystonia community are congratulating Beach and sending him their well-wishes.

Beach developed dystonia in his left leg in 2002. It took four years of doctor visits before he was diagnosed, and he then began treatment at the nearby National Institutes of Health (NIH). Treatment with quarterly therapeutic botulinum neurotoxin injections has preserved his ability to walk and run, albeit with a limp.

"When dystonia entered my life 15 years ago, I assumed my running career was over,” says Beach. “I'm grateful to the people at NIH and everyone else who's helped me keep going. I've also learned how adaptable the human body is."

Dystonia is a chronic, often disabling, disorder marked by extreme muscle contractions that cause uncontrollable movements and abnormal postures in the body and limbs. Individuals who are affected struggle against their own bodies to walk, write, sit, eat, and/or speak. The nervous system is hijacked by chaotic signals that instruct muscles to contract excessively. Dystonia is frequently misdiagnosed but is more common than Huntington’s disease, muscular dystrophy, and Lou Gehrig’s disease (ALS). There are multiple forms of dystonia that impact people of all ages and backgrounds. There is currently no cure, and though treatments exist, there is no single therapy that benefits even a majority of patients.

“Ben’s accomplishment is remarkable for any human being, let alone someone with the added challenge of dystonia,” says Janet Hieshetter, Executive Director of the Dystonia Medical Research Foundation. “He is truly an inspiration to all of us at the DMRF and in the dystonia community.”

Beach's story has been covered by multiple national news outlets including The Washington Post and Associated Press.

More information about dystonia is available from the Dystonia Medical Research Foundation at www.dystonia-foundation.org or 800-377-3978.

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