Three months after the Rockville Centre community came together to raise money for Madeline Norton’s battle with a rare genetic disorder, organizers are preparing for another major fundraiser aimed at helping move research toward a potential treatment.
The Taste of Rockville Centre fundraiser, scheduled for July 25 at Nick’s Pizza on Sunrise Highway, will feature unlimited food and drinks for a $100 admission. All ticket purchases and donations will be matched dollar for dollar by an anonymous donor, increasing the impact of every contribution.
The event follows April’s Madeline’s Mission Spring Fest, which brought together residents, local businesses and supporters for an afternoon of food, drinks and entertainment. The fundraiser raised more than $28,000 to support efforts connected to Pantothenate Kinase-Associated Neurodegeneration research.
“That $100 donation becomes $200, just like that,” Gerard Norton, Madeline’s father, said. “This is one of our final pushes that we’re doing for Madeline’s campaign.”
Madeline was diagnosed with PKAN about a year ago. Norton said researchers have already created the gene therapy vector and are now working toward the testing needed before seeking approval from the U.S. Food and Drug Administration. He said approximately $1 million to $1.5 million remains to fully fund the project.
“This is like our last-ditch fundraising effort for the year for Madeline,” Norton said. “We’re excited about it and it’s going to be matched.”
The fundraiser was originally planned for the St. Agnes Parish Center, but the Nortons moved it to Nick’s Pizza last week.
“I reached out to Sal over at Nick’s and I was like, ‘Why don’t we just do it at the restaurant?’ Because there’s tons of people that want to donate, but not that many people that actually want to show up,” Norton said.
Nick’s Pizza owner Sal Buglione said the restaurant setting will allow supporters to participate while keeping the focus on raising money for Madeline’s Mission.
“Everybody donate that day, whatever it is, whatever they could donate, to raise money for this,” Buglione said.
Buglione became involved with Madeline’s Mission after meeting Madeline at an earlier fundraiser and said the experience left a lasting impression.
“When she came in, she just knocked on my heart,” Buglione said. “She stole my heart, that little girl.”
Buglione, whose restaurant has supported community fundraisers in the past, said helping the Norton family is a way to give back.
“For us, it’s easy to donate some food or do a fundraiser,” he said. “The superstars here are the people like the Nortons, having to deal with what they’re dealing with.”
Norton encouraged residents who are able to attend to come out and support the effort, while those unable to attend can still make a donation.
“If you’re on the fence, please come,” Norton said. “It’s not every day that you get to double your donation somewhere.”
