Fresh off an especially successful year, one local organization is gearing up for another annual fundraiser.
Pietro’s Fight – a nonprofit co-founded by Dyker Heights parents Dayna and Manni Scarso in hopes of helping find a cure for Duchenne Muscular Dystrophy (DMD) – will host its fifth annual Fight Night, “The Anniversary Knockout” on Thursday, March 9 at the El Caribe Country Club (5945 Strickland Avenue).
The event, which typically funds the group’s efforts to find a cure for DMD – a recessive X-lined form of muscular dystrophy that affects one in every 3,500 to 5,000 boys, including the Scarso’s son, Pietro, a seven-year-old boy who was diagnosed at just three — will fund even more this year, according to Pietro’s mother, Dayna.
“We’ve teamed up with two other non-profits, Michael’s Cause and Ryan’s Quest to fund something called DMD Therapeutics,” Scarso told this paper, stressing that there are few, if any drug candidates that currently demonstrate the same level of efficiency that DMD Therapeutics has in terms of restoring and preventing muscle damage in mdx mice. “We really want to raise as much funds as possible this year because this venture really has so much promise.”
Pietro currently receives treatments with Exondys 51 (also known as Eteplirsen, the first drug ever approved to treat the disease).
“Every year it gets more challenging,” Scarso added. “Though so many milestones have been achieved, we really are on the brink of turning this from a fatal disease to a curable disease.”
That has been evident in both the work of Pietro’s Fight, which has spent a record-breaking amount of time lobbying in Washington for awareness of the disease, and in Pietro’s personal progress.
Currently, the second grader is in his 86th week of trials for the drug from manufacturer Sarepta Therapeutics which supplements the patient’s absent gene, Exon 51, and slows down the progression of the disease while research and trials continue towards an ultimate cure.
“Pietro is doing amazing,” said Scarso, stressing that the Brooklyn boy currently has a 91 average (despite missing at least day a week of classes) at his school, Saint Patrick’s in Staten Island. “He’s on week 86 of 96, and he’s really doing wonderfully. This is not a cure, it’s to slow the progress of the disease, but he’s doing so great.”
Still, she said, she and her family are always anxiously looking towards the next thing to help their young boy, and the countless others in his shoes.
“We get nervous looking for the next thing because, like I said, this is not a cure,” she said, noting that, today, there is still no known cure for DMD. “We’re just trying to fund as many projects as possible that we can cross our fingers and pray for results from.”
Since its inception in 2012, Pietro’s Fight has raised more than $1 million towards finding a cure.
“I really just want to celebrate all boys with DMD,” Scarso said. “It’s a real difference from what it was five years ago, so we really do believe that it could be different for these boys in the future. We’re just trying to work for that.”
Honorees at this year’s “Fight Night” will include Charles Fabbella and Maria Castellano of Ben Bay Realty, Antonio Alaimo of Villabate Bakery and Rocco Coluccio of Menny Memories and Coluccio & Sons.
For more info on Pietro’s Fight, or to purchase tickets for Fight Night, visit pietrosfight.org.