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Sept. 14 bike run to benefit three charities

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DEXTER — People along the St. Lawrence River and eastern end of Lake Ontario can expect to hear hundreds of motorcycles roar past them Sept. 14.

The inaugural “Thunder for a Cause” bike run will go through Evans Mills, Alexandria Bay and Clayton before coming to the village as part of a benefit to foundations associated with the rare diseases and disorders of Niemann-Pick, diffuse intrinsic pontine glioma and pheochromocytoma/paraganglioma.

“I wanted to put a bike ride together for a very good cause,” said William F. Caprara, co-owner of Caprara Bros. “You wouldn’t believe the calls we’re getting.”

He said the goal is to have about 300 riders participate in the run, which costs $20 per bike and $10 per passenger. The event begins at 11 a.m. Sept. 14 at F.X. Caprara Harley-Davidson, 17890 Goodnough St., Adams Center. Registration begins an hour earlier. Mr. Caprara will be one of the riders.

Stops include The Hoover Inn, Evans Mills; Skiff’s, Alexandria Bay, and O’Brien’s, Clayton, before ending at Willie’s Bulldog Tavern and the village fire hall here. A family fun day will take place from noon to 4 p.m. near both O’Brien’s and Willie’s.

The event will be held rain or shine. All proceeds will go to foundations to help find cures for the diseases and disorders or assist families in bringing fun to a sometimes somber situation. Mr. Caprara said he knows all three families involved.

Some members of the Lane-Parody family here in the village have Niemann-Pick disease, where “harmful quantities of lipids accumulate in the spleen, liver, lungs, bone marrow and the brain” which may result in “lack of muscle coordination, brain degeneration, eye paralysis, learning problems, loss of muscle tone, increased sensitivity to touch, spasticity, feeding and swallowing difficulties, slurred speech and an enlarged liver and spleen,” according to the National Institutes of Health.

Diffuse intrinsic pontine glioma took the life of 5-year-old Madeline E. Musto in February 2012. She had a rare tumor in her brainstem. According to the National Cancer Institute, the central nervous system tumor forms from supportive tissue of the brain and spinal cord. Her mother, Erin Musto, is a graduate of General Brown Central School District. Mrs. Musto resides in Guilderland now with her husband, Matthew R., and other children.

Pheochromocytoma/paraganglioma originates most often in or on adrenal glands. Tumors develop and quickly spread, which could lead to cancer, depending on the person’s type of gene mutation. One member of the local Dupee family, Erika K. Hunt, received radiation treatment for the disease in 2009, but she experienced several complications. Her body continued to fill up with fluid and she died in December of that year.

“Generally, these three things are so unrelated, but these three families are so related,” Mrs. Musto said. “We’ve had a lot of support. It’s good to know you’re not alone. Money can be helpful, but going to those events are invigorating.”

Even after the death of Erika, her sister Elissa M. Dupee and other family members with pheo/para have traveled annually to the National Institutes of Health in Maryland to have routine checkups. Ms. Dupee said magnetic resonance imaging helps doctors look for tumors on the chest, neck, abdomen and pelvis.

During the family fun celebration, there will be live entertainment, children’s activities, raffles, a can drive and vendor booths. People may preregister at the Harley-Davidson store, or submit questions via email to info@thunderforacause.com.

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