Rochester Native Organizes Cornhole Tournament to Bring Awareness to Son’s Neurological Disorder
The Dystonia Medical Research Foundation (DMRF) is teaming up with the Cornhole League of Rochester to hold the largest Cornhole tournament in the Western New York region on Saturday, September 28, 2013, in the outfield of Frontier Field, Rochester's Triple-A Ballpark and home of the Red Wings. Rochester native, James Metherell and his wife Cassie are organizing the tournament in honor of their oldest son Caleb, who is diagnosed with a childhood form of dystonia.
“Caleb is growing up in a body that increasingly refuses to do what he tells it to do,” explains James. Dystonia is a neurological disorder characterized by excessive, involuntary muscle contractions that result in twisting, repetitive movements as well as sustained abnormal postures. There are multiple forms of dystonia that impact people of all ages and backgrounds.
Caleb’s symptoms started at five years of age with a mild speech impediment. There was little change for almost two years, until Caleb suddenly began to bend over uncontrollably in an awkward and painful posture. “It was agonizing for him to stand, or even sit, unless he could rest his body in a fetal position,” says James. “He can no longer speak clearly, and communicates by whispering strained and strangled sounds. He struggles to keep up with classmates, not due to intellect, but because his body won’t allow him to speak up in class, sing in chorus, write notes, or otherwise participate fully. Caleb has slowly lost all of these abilities over the past few years.”
Despite having medical coverage, Caleb was not diagnosed until he was nearly 9 years old—and after several misdiagnoses. The correct diagnosis came after a positive test for a gene mutation known to cause dystonia. The gene was discovered through research funded by DMRF. “It’s a sad reality that there is often a long time between symptom onset and proper diagnosis for most dystonia patients,” James explains, “and this can only be improved through greater awareness among the public as well as people in the medical field.”
The Metherell’s are organizing the 1st ever “Toss4Dystonia” Cornhole Tournament to promote greater awareness of dystonia and raise much-needed funds for medical research toward a cure.
Caleb is now 10 years old. His symptoms are partially subdued through medication. While there are several treatment options for dystonia, there is currently no single therapy that benefits even a majority of patients. Researchers around the globe are urgently working to better understand this disorder and find a cure.
More information about Toss4Dystonia, including sponsorship opportunities and how to register, can be found at www.toss4dystonia.org or on Facebook at https://www.facebook.com/Toss4Dystonia
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 www.dystonia-foundation.org.