Bayport middle school to walk for rare disease

By ANTHONY PERROTTA
Posted 9/26/19

Two students within the district currently have a form of the autoimmune disease

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Bayport middle school to walk for rare disease

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James Wilson Young Middle School is hosting a walk event next month to help combat a rare disease, juvenile myositis, which includes juvenile dermatomyositis and juvenile polymyositis, a group of rare and life-threatening autoimmune diseases in which the body’s immune system attacks its own cells and tissues. 

The local event, Walk Strong to Cure JM, is sponsored by the Cure JM Foundation, which was founded in 2003 by three parents—Shari Hume, Tom Hume and Lisa Felix—and a grandmother, Harriet Bollar, of children living with the disease.

The foundation’s website states that even within these designations, JM affects every child differently. 

Some children experience a mild form of the disease, while others follow a more severe and potentially more debilitating course. Some of the more onerous secondary symptoms include calcinosis (the formulation of calcium deposits in any soft tissue), digestive tract complications, vasculitic ulcers and contractures. 

The foundation has held Walk Strong events throughout the country for three years, but next month marks James Wilson Young Middle School’s first time hosting.  

Tracy Van Ness, the chair for the event (which represents the New York and New Jersey metropolitan regions), feels the move is appropriate, being that two children within the school district are living with the disease. One of the children is her 16-year-old son, Bradley, who has been living with JDM for the past five years. 

The foundation’s inaugural walk was held at Eisenhower Park in East Meadow, while the second walk was held in Scarsdale, N.Y. This year, though, Van Ness decided to bring the walk home.

“We are extremely excited to engage our local community with this event,” said Van Ness, who also serves on the foundation’s board of directors. “The Walk Strong team has worked extremely hard to make this the most successful walk yet.” 

Madison Coffey, 16, is the second child within the Bayport-Blue Point School District living with a form of the disease. Madison’s father, Kevin Coffey, also serves on the foundation’s board of directors and is the chief financial officer. He said the key focus of the upcoming walk is to raise awareness and, most importantly, money for a cure. 

His daughter has been battling JDM for over 10 years now. 

About two to four children, per million, in the United States are diagnosed with JM each year, according to the foundation’s numbers. The disease begins in childhood or the teen years and affects girls twice as much as boys. 

As for what causes JM, researchers cite several factors—both environmental and genetic. While there is no cure, the foundation notes the advances in early diagnosis and aggressive treatment have continued to improve outcomes. n

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