All Aboard the Love Train

By Katie McFadden

All aboard the love train! As part of this month celebrating love, the love train is making its final stop on Sunday, February 25—Rockaway. And it’ll be transporting a big dose of love as its conductor, young Anthony Filippazzo spreads awareness for Williams Syndrome, a rare disease that affects him and thousands of others across the country.

According to Anthony’s mom, Camille Fortunato, “Williams Syndrome is a microdeletion along chromosome number 7. They’re missing 50% of their elastin. Elastin is the protein in our vessels that keeps the vessels open and keeps them malleable, so without the elastin, everything stiffens up.” She added that, “It’s common to have stenosis to the arteries, and being compromised, it’s forcing the heart to pump harder, work harder to circulate the blood.”

Anthony Filippazzo, 12, has lived with complications from Williams Syndrome since he was born in 2011. After two years and dozens of doctors’ visits, the Filippazzo family finally got some answers from a geneticist who gave them the correct diagnosis. This came on top of a diagnosis of autism. Once they had a name for it, the family began to learn everything they could about the disease impacting their son, including a Russian roulette of possible complications. “Due to the stenosis, those with Williams Syndrome have a much greater risk of cardiac arrest with anesthesia, so any procedure poses a greater risk for them,” Fortunato said.

This complicated Anthony’s need for a cardiac ablation, due to debilitating arrhythmia issues. “His heart rate would beat to 280 to 330 spontaneously. When his electrical rhythm would go out of whack, we would need to hold ice over his nose and mouth, effectively suffocating him for 10 seconds to force the body to fight for air, which would usually be sufficient to reset his heart rate. When that didn’t work, we would have to rush to the emergency room to get a line to his heart that would stop his heart and reset it,” Fortunato said. “We put off the surgery to fix this due to the problem with anesthesia.” Anthony received medication to reduce this complication but when the medication stopped working as well, the family knew they would have to risk the surgery. In January 2023, Anthony underwent the cardiac ablation surgery. Fortunately, all went well.

Shortly after Anthony’s diagnosis, Fortunato hit the ground running trying to learn what she could about the disease, and to do what she could to help people like her son find some relief. She connected with the Williams Syndrome Association (WSA) and began helping with fundraising and awareness efforts to help support WSA’s research efforts. In 2017, she hosted her first big fundraiser with a white night gala at El Caribe, where they were able to raise $1 million towards a research study. “It put the bug in me to do more. We need more studies,” Fortunato said.

So in 2018, she launched the Anthony Filipazzo Grant (AFG) for Williams Syndrome research, under the umbrella of WSA. The gala was to become an event held every two years, but those plans were derailed due to Covid. However, with the success of Anthony’s surgery in 2023, Fortunato was inspired to move full steam ahead in her fundraising and awareness efforts. The family held another successful gala in November 2023, and even got an extra boost when family friend, Joe Mure of Neponsit, decided to dedicate last year’s Little North Pole fundraising efforts, in part, towards the WSA, on behalf of Anthony. It was there where Rockaway first got to see the love that emanated from the little boy as he bravely spoke on the stage and danced the night away.

While Anthony has lived a life where his heart has had to work twice as hard, he’s always had something that’s come easy—his ability to love. “What I always marvel at with those with Williams Syndrome is that despite all their challenges, their gift of love is always at the forefront. Anderson Cooper did a special a few months ago that said researchers identified the same friendly gene that’s in dogs as being present in individuals with Williams Syndrome, and that’s how they make you feel,” Fortunato said.

With Anthony’s love at the forefront, and February being Valentine’s month, heart disease month and the month for rare disease day, it presented the perfect opportunity for the family to share Anthony’s love with the world, while also raising awareness for these issues and how they tie into Williams Syndrome. And what better way to do that, than to launch a love train. Anthony just needed a train.

Coincidentally, at the Maimonides Pediatric ER Benefit in December. Fortunato met Rockaway local Frank Naccarato Jr. of Naccarato Contracting, and when she learned he was a builder, she asked if he would and could build a train. Naccarato was on board. He built Anthony a dream AFG Love Train, and every weekend this month, the love train has been making stops from Manhattan to Staten Island to Brooklyn, stopping at small businesses that have jumped on board to take photos and share the love train on social media, spreading awareness for Williams Syndrome. “It has been enormous. We’ve met so many amazing people and they’ve treated this with so much love. It’s a great vibe,” Fortunato said. And the last stop? Rockaway.

On Sunday, February 25, Anthony and his love train will be making its final stops around Beach 116th Street and Beach 129th Street, and all businesses are encouraged to take photos with Anthony and help spread the love. And since this is the last stop of a month-long effort, it’s cause for a celebration. “We thought let’s have a party to culminate our efforts,” Fortunato said. But of course, a train needs to end at a station. When Fortunato toyed with the idea, Naccarato pulled through again. “My friend owns a station,” he told Fortunato. That friend is Tommy Bulloch, who owns Bulloch’s gas station on Beach 129th Street. When Bulloch heard the idea, he was immediately on board.

So on Sunday, all are welcome aboard the love train. Come party at Bulloch’s on Beach 129th from 2:30 p.m. to 4:30 p.m. Anthony will be dressed for the occasion to introduce some performers including Emma Berardelli and local singer Bella Priolo. La Sorrentina will be serving up pizza. There will be a DJ to spin some danceable tunes. And even Cupid (Roger Hanson) will be stopping by to help spread some love. “Anyone who wants to share a little love, support individuals with Wiliams Syndrome and neurodiversities, have some pizza, dance, come on out,” Fortunato said.

If you see the love train around town on Sunday, take pictures and tag @AFresearchgrant on Instagram. To donate or learn more, see: www.wsresearch.org