Will Kenney is holding up a megaphone for rare diseases. The rising ninth-grader doesn’t just raise funds for any medical condition. He’s helping causes that don’t get much attention at all.
Kenney’s gearing up for the third annual Will’s Carnival for a Cause, on Saturday, Aug. 6. The family-friendly festival will be held from 4 to 7 p.m. at ChickBerry Farms in Laurel.
After two successful years, Kenney said he is convinced his annual fundraiser for the Sturge-Weber Foundation can do even better, so this year, funds will be split between SWF and Dysautonomia International.
“We need to bring awareness to both causes. The first year, we had a lot of people come up who didn’t know [about Sturge-Weber]. We knew we would reach a lot more,” said Kenney, who lives in Gumboro and is an Indian River School District student.
He said he knew he could build momentum for the event. So, after raising $5,000 in year one and $10,000 in year two, this year’s goal is $15,000.
Admission is free. People can pay for a wristband to enjoy the games and rides, or purchase tickets for individual activities.
There are 30 games, pony rides, a petting zoo, a bounce house, hayride and the popular “duck train,” in which a four-wheeler drives children around in small barrel cars shaped like ducks.
D.J. Whisper will keep music flowing, with John Syphard performing on the steel drums and a juggling act at 4:30 p.m.
Food stands include Vinny’s Pizza, plus ice cream by Vanderwende Farm Creamery.
People can shop at the silent auction, craft vendors and other product vendors.
“Kids can enjoy it, along with parents. Everybody just has a happy time to support great causes,” Kenney said.
ChickBerry Farms is located at 32099 Jestice Farm Road, Laurel.
“Come out and support us!” Sandy Kenney said.
Donations are welcome up to a week beforehand, including prizes for children’s games and silent auction items. Cash donations would also be greatly appreciated, Kenney said.
It takes about nine months of planning to hold the festival, said Kenney, who began working on this year’s edition almost as soon as the last one ended. He and his dad build most of the games, Sandy Kenney said.
“It’s great to see all the families enjoying their time with each other, coming out and having fun with their families to support a great cause,” Kenney said.
Volunteers run the whole carnival.
“I recruit fellow kids … and fellow adults I know and people that know me through the community of dysautonomia and Sturge-Weber,” Kenney said.
His efforts won him the Prudential Spirit of Community Award for 2016, which included a four-day trip to Washington, D.C.
“It was great,” he said. “I really enjoyed talking with the other winners around America and seeing what they did … and bringing awareness to causes they were supporting.”
To learn more or contribute to Will’s Carnival for a Cause, visit the Facebook page “Will’s Cause,” or email email@example.com.
Two causes to share this year’s proceeds
Both foundations benefitting from a 50/50 split of the proceeds aim to improve research, awareness, patient support and more.
Inspired by a young local girl his mother knew from the community, Kenney chose the Sturge-Weber Foundation for his first two fundraisers. It helps individuals and families affected by Sturge-Weber Syndrome and port-wine birthmark-related conditions. The syndrome can be characterized by facial birthmarks, glaucoma, seizure disorders, neurological abnormalities, sometimes including eye, endocrine and organ irregularities, or developmental disabilities.
“I knew I wanted to add more causes this year. I didn’t know exactly which ones needed awareness,” Kenney said.
But he was inspired by family friends who live with the challenge of postural orthostatic tachycardia syndrome (POTS). That’s the most common diagnosis under the dysautonomia umbrella, which includes many conditions affecting the autonomic nervous system, “which controls everything, like heart rate, blood pressure, digestion, temperature control, stuff that you don’t think about that your body’s supposed to automatically control,” said one young woman, Crystal Caldwell. “My body has a hard time controlling that.”
As she previously told Coastal Point, Caldwell’s own symptoms veer between lightheadedness, fainting, fatigue, headaches, heat rash, gastrointestinal problems, anxiety, nausea and rapid heart rate.