By Ashley M. Casey
Associate Editor
The country’s longest-running fundraiser for the Muscular Dystrophy Association has taken place right here in Baldwinsville for nearly 70 years.
The MDA was founded in 1950, and the Van Wie Mixed Doubles Bowling Tournament came to B’ville Sports Bowl just a couple of years after the tournament’s inception. This year’s tournament raised about $4,500 for the MDA — more than enough to send two Central New Yorkers with muscular dystrophy to the Rochester Rotary Sunshine Campus in Rush, New York, this summer.
“They’re with children that have the same sort of ailments that they do. They gain confidence. It’s a stepping-stone to young adulthood,” said Karen Fink, development coordinator for MDA of Central and Western New York.
Courtney Perrin, 16, of Baldwinsville, will attend the summer camp for the fourth time this year. She was on hand during the final weekend of the Van Wie tournament on Jan. 25 to throw out the first ball. At camp, Courtney has made friends who understand what she’s going through.
“We all have a muscle disease, so we can all relate to each other,” she said. “It’s just little things — I can’t get up the stairs. I get really tired. … I can’t talk about it with my other friends.”
Despite being away from her camp friends all year, Courtney said it’s easy to reconnect each summer.
“It feels like we just left off,” she said.
The camp has helped Courtney gain confidence and discover new interests such as playing the guitar and archery.
“They introduced her to archery, and now she loves archery and has a compound bow,” said Amy Perrin, Courtney’s mother.
Courtney said she wants to volunteer as a camp counselor in the future.
In addition to introducing families to the Sunshine Camp, MDA helps connect families with valuable resources. MDA of Central and Western New York connected the Perrins with Dr. Ai Sakonju, a neurologist at Upstate who specializes in neuromuscular medicine.
“They help us network with other families,” added Kevin Perrin, Courtney’s father.
Fink said the local MDA chapter serves 2,500 families in 34 counties in Western and Central New York. MDA provides referrals to doctors, support groups, loan closets for medical equipment and funding for research.
“In the last four years, MDA has helped to develop nine drugs that have been approved by the FDA,” Fink said. “Those were the only drugs that have been approved since 1950.”
Amy Perrin credited Fink with getting Courtney involved in MDA advocacy.
“We love Karen. We’d love to adopt her if we could. She gets Courtney out of her shyness, having her speak at events,” Amy said.
Raymond Kyle-Ducharme, of Syracuse, learned about MDA when his great-nephew, Colton Kehrer, was diagnosed with Duchenne’s muscular dystrophy two years ago. Upstate Golisano Children’s Hospital referred the family to the organization.
“Any questions or concerns, you can contact the MDA and they will give you anything you need,” Kyle-Ducharme said.
Colton said his favorite part about Sunshine Camp is “definitely fishing,” but he is looking forward to seeing his friends this summer too.
“His camp counselor is from Cicero, and she’s hoping to return this summer, too. We keep in touch with her,” Kyle-Ducharme said.
Colton and his family attend MDA’s annual holiday party in Fayetteville and participate in the MDA Muscle Walk held at Onondaga Community College.
“Colton brought in about 12 people to walk with him that day and we raised $767 our first year,” Kyle-Ducharme said.
Colton also won first place in a T-shirt design contest at the walk. He has been asked to be an ambassador at MDA events, like the Van Wie Tournament.
Colton accompanied Fink as she presented Gary and Deb Peterson, owners of B’ville Sports Bowl, with a plaque commemorating their business’ involvement in the seven-decade fundraiser.
The Petersons took over B’ville Sports Bowl a couple years ago and were eager to continue hosting the Van Wie tournament.
Deb Peterson has been baking chocolate chip cookies from scratch and selling them to benefit MDA. This year, she raked in $1,200 in donations for the organization thanks to cookie sales.
“I just think it’s a great cause. It’s a feel-good thing,” Gary Peterson said. “It helps remind the bowlers that it’s more than just bowling for money and recognition. It keeps them focused.”
