One local organization celebrated more than just a successful fundraiser on Saturday, September 24.
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) — hosted its fourth annual “Pietro’s Fight to the Finish Line” 5k over the weekend, at which the organization also lauded some good news from the Food and Drug Administration (FDA).
The administration, on Sunday, September 19, announced its official approval of Exondys 51 (also known as Eteplirsen), the first drug ever approved to treat patients with DMD.
The disease is 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.
“It was incredible. We had such a great turnout, and everybody was celebrating the great news,” said Dayna. “It was a gray day but that didn’t stop our sun from shining.”
Currently, the second grader is in his 62nd 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.
Since its inception in 2012, Pietro’s Fight has raised more than $1 million towards finding a cure.
The race — which Pietro himself was able to walk in this year alongside his godmother — kicked off at the Veteran’s Memorial Pier at Bay Ridge Avenue and Shore Road at 9 a.m. and featured appearances by State Senator Marty Golden, Congressmember Dan Donovan and even Spider Man.
According to Donovan, the approval of Exondys 51 is direct proof that “what you do actually matters.
“I never knew about this disease until two years ago when I met Dayna, Pietro and Manni,” he said, noting that he wrote to Congress to help expedite the drug approval process. “This is proof that what you do matters. People listen, and sometimes we get a success story.”
“This disease strikes one in 3,500 children, and the outlook for that one child is not good,” he said, thanking those who have stuck with the Scarso family from the beginning for their help in making change for those affected. “What a fight these families are having, but it’s because of the good work that you do that we can get this today. The first drug ever approved for DMD was done by this family here, and each and every one of you. Thank you for making a difference.”
“On behalf of our family and our team, we want to offer our heartfelt thanks to everyone who made Saturday so successful, including all donations that were made in the form of food, money or time, the Parks Department, the Fire Department and Police Department,” Dayna said. “None of this would be possible without all of you standing with us and joining in our fight to the finish. With your support we will continue this mission of love and fight for a cure until a cure is found. We will not stop until the day comes that when you are diagnosed with Duchenne Muscular Dystrophy there is a simple prescription given to you to live a normal life.”
As for the 5k, Dayna said, her little boy had a blast.
“He couldn’t get enough of it,” Dayna added. “Pietro is always so happy and so excited. He loves to see his friends — old friends, new friends — and supporters at these events. It was a really awesome day for him.”
Entertainment was provided by Menny Memories Entertainment, as well as Tommy’s Costume Character. Memories were captured by Daniel Marino of Marino Photography as well as Stas Furman of Factor5Films. Food was provided by Bagel Boy, H & L Bagels, Starbucks, Go Fresh or Go Home and Utz. The event was timed by John Edwards of www.rockapulcorun.com.
Other sponsors included the Kiwanis Club, Investors Bank, Bay Ridge Window & Door, Geico and more. For a full list of sponsors or more information on what Pietro’s Fight has lined up (including a new kids-centric Halloween event hosted in part by Acting Out! Theater Company), visit www.pietrosfight.org.