A RARE Celebration

There’s a birthday party in town, and you’re all invited.

The third annual RARE Community Event will be held on June 11th, 2023 at the newly renovated Lewisboro town park from 2:00 p.m. to 7:00 p.m. Thanks in large part to Gossett Brothers Nursery, the main sponsor, this party will include pony rides, a disabled petting zoo, fire trucks, t-shirt tie-dying and face painting, along with performances by local children’s choirs, a Broadway magician and the Harlem Wizards (courtesy of Burke Energy). Plus, you can also create cards for sick children who are battling illnesses at Montefiore Children’s Hospital.

This birthday extravaganza is hosted by Lewisboro resident Jessica Foglio – a former opera singer/current music teacher, mother of three and the founder of the Salla Treatment and Research Foundation, or STAR. The foundation funds research for Salla disease – a rare genetic condition, and the party serves as a fundraiser. Tickets are $25 for adults and $15 for children; all proceeds go to STAR and its affiliates.

What is Salla disease?

When Foglio’s second son Ben was two years old, he was diagnosed with Salla disease, a rare genetic condition where sailin, a protein in the cells, doesn’t function properly and prevents the breakdown of certain fats and proteins. Salla disease causes poor muscle tone (hypotonia) and developmental delays. The symptoms present similarly to cerebral palsy, which is what Ben was incorrectly diagnosed with at first.

At the time of Ben’s correct diagnosis, there was barely any information online and very little research or treatment options available. So Foglio and her husband Michael founded STAR to serve as a catalyst for research and treatment, and, hopefully, a cure. 

As of this May, they’ve raised $650,000, all of which goes to rare disease research at institutions including Montefiore Children’s Hospital, Einstein College of Medicine, The National Institute of Health and University of Paris.

More party details

Foglio’s RARE event will be the first ticketed event at the newly-opened town park, which is now fully wheelchair accessible and includes accessible swings and slides as well as sensory areas. She says the party is designed to serve many purposes.

“It’s a birthday party for my son,” Foglio explains. “But Ben doesn’t like toys or TV; he loves people.”

And because Foglio knows that a good party also includes some adult “entertainment,” all adult tickets include wine tastings, endless Captain Lawrence beer, and unlimited hot dogs – courtesy of the Lions Club’s grill masters. Foglio says she’s excited to see people come together yet again for a great cause.

“This event has shown me the importance of community and what can be accomplished if we all come together,” she says. “In the broken world that we live in, we’re so quick to tear each other down. But once in a while, you get that rare opportunity where you see people just being kind.”

And, Foglio hopes it’s also an opportunity for everyone to learn something, too.

“The goal of the event is to create awareness of rare disease research, rare disease families and what Salla disease is,” she says.

The best gift she could give

“Last year I raised about $15,500,” says Foglio, referring to last year’s party. “Shortly after we raised the money, we wrote up a contract with Einstein University to specify how the money will be used.”

This year, Foglio hopes to raise $25,000. STAR is currently focused on finding a treatment for Salla disease.

“We’re trying to get approval of a drug that will work, and it’s one that’s already FDA cleared,” she explains. “But it’s not a cure. Our main focus is to get a treatment that would stop the progression of the seizures and the muscle deterioration.”

Looking forward, Foglio sees gene editing as a potential cure. Gene editing is a process where scientists can change the DNA of a fetus as it grows within the mother. So, when a pregnant person learns they have a child that’s sick with a rare genetic disorder, this technology can be used to make them a carrier of the disease rather than having the disease. But, Foglio says, that type of scientific progress will likely take another 20 to 30 years.

For now, Foglio’s sights are set on finding a treatment, and the RARE event is helping her get there. At the same time, it’s a celebration for Ben.

“I don’t know how to celebrate Ben other than to throw an event that would uplift children like him by funding the necessary research,” she says. “That’s the ultimate gift I want to give him: a treatment for this.”