SOUTH SALEM, N.Y. - When Ben Foglio was diagnosed with a rare neurodegenerative disease called Salla in 2018, his parents refused to passively accept the diagnosis. Instead, Jessica and Michael Foglio founded the STAR Foundation, and the impact has been significant.
“We’ve raised over a million dollars for treatment and research,” said Jessica Foglio.
Each year, the Foglio family brings the community together at Lewisboro Town Park to celebrate generosity, inclusion, and hope.
For the fifth consecutive year, the foundation hosted its annual fundraiser at Lewisboro Town Park on Sunday, May 17. Between visits from the fire department, pony rides, performances by the John Jay Middle School Rock the Halls Band, and plenty of food, there was no mistaking who the star of the show was.
“He’s the mayor of Lewisboro,” joked Molly Gitelson of Ben Foglio.
Comfortable in the spotlight, Ben greeted everyone with a smile. Gitelson’s son, Owen, knows exactly why people are drawn to him.
“He’s a super happy person who lights up the room,” said the John Jay student.
Still, Ben faced some stiff competition from the ponies. Madi Deblin of Clearbrook Farms had plenty of praise for Cookie, one of the event’s four-legged attractions.
“He’s really good at his job and is always a good boy,” said the farm worker.
Little Simon McMahon certainly enjoyed the experience, taking to the saddle like a natural cowboy.
“The ride was bumpy,” said the 3-year-old.
His mother didn’t get the chance to ride herself, but frequent park visitor Caitlin McMahon said supporting the fundraiser was an easy decision.
“I’m just happy to support this loving community,” she said.
According to Amy Barrow, many others feel the same way.
“Kids in the Rock the Halls Band have classmates with special needs, so they’re motivated to be here,” said the Katonah resident.
That spirit of inclusion comes naturally to the organization. Barrow said her son, a singer, found the confidence to try guitar because of the welcoming atmosphere.
“The organization is so warm and welcoming that, no matter his skill level, he felt free to give it a try,” she said. “His confidence and stage presence have grown so much.”
Lead singer Aria Pasqualone appears to have plenty of confidence already. For the middle school student, performing is simply about having fun.
“It’s a great way to express yourself, and you don’t need to be perfect with every single note,” she said. “You can just be yourself. It’s not like work.”
Lee Hillman of Ridgefield enjoyed the music as much as anyone.
“They’re having a good time, and that’s what matters most,” he said.
Sam McTavey agreed. While he was far from being in charge, the Katonah father didn’t mind pretending.
“That’s why they gave me the hat,” McTavey said proudly while wearing a plastic firefighter’s helmet.
More seriously, he said he feels fortunate to know the Foglio family and support their efforts.
“I feel very lucky,” McTavey said.
Amid the festivities, there was also an opportunity to learn more about Salla disease. Dr. Sarah Goebel, a neuroscience researcher for STAR, explained some of the challenges faced by those living with the condition.
“They can have cognitive and muscle problems, as well as developmental delays,” said Goebel.
A lack of awareness remains another obstacle.
“Many clinicians have never even heard of Salla and are not aware of available therapies,” she said. “We’re also trying to put the disease on their radar.”
And if there is a face capable of raising that profile, it is Ben’s.
“If we could see the world through his eyes,” his mother concluded, “we’d see that he’s an angel on Earth.”
To learn more, visit www.star-foundation.io
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