Classrooms across the neighborhood got comfy for a good cause on Thursday, December 18 as 25 schools participated in a community-wide fundraiser-turned-pajama party, PJs for PJs, for Pietro’s Fight.
“We had such an amazing response. All the kids knew Pietro and all the kids knew somewhat about the Duchenne Muscular Dystrophy (DMD),” lauded Dayna Scarso, co-founder of Pietro’s Fight and loving mother of five-year-old Pietro Joseph Scarso, a bright-eyed boy fighting the good fight against DMD – a recessive X-linked form of muscular dystrophy, affecting around 1 in 3,600 boys.
No known effective treatment or cure currently exists for Duchenne, but, according to Scarso, there are eight drugs in trial that are dosing boys with the disease and countless in clinical trials, all aided by organizations like Pietro’s Fight.
“It was incredible to see kindergarteners, first and second graders acknowledge what DMD is,” said Scarso, “not to mention the spirit of Christmas-time and preserving childhood for Pietro.”
Pietro’s Fight was founded by Scarso and her husband, Manni in 2012 and, since then, has raised thousands of dollars for a cure.
“It’s been such an adrenaline rush,” said Scarso, joined at Pietro’s school, Stepping Stones, The Next Step (9321 Ridge Boulevard) by State Senator Marty Golden – also sporting his best holiday PJs.
“This is just such an important cause,” said Golden, decked out in Saint Nick long-johns.
One of the organization’s number one goals is to urge the FDA to approve Eteplirsen, a drug that has been making its rounds in clinical trials for the last three years and has since shown to slow down the progression of the disease and has defied the natural history of DMD.
The Scarsos, fresh off their last fundraiser of the year, told this paper they were proud of the projects Pietro’s Fight has funded this year including: work with Dr. Louis Kunkel in discovering the gene that causes DMD, work with Joshua Selesby of Iowa State University and with Dr. Jerry Mendel of Nationwide Children’s Hospital for Milo Biotechnology in finding that quercetin, an orally available and safe agent, promotes PGC-1α activity in cell culture and in vivo models.
Still, Scarso said, Pietro’s Fight would be nowhere without the neighborhood backing.
“It’s incredible,” she said, “and we’re looking to do even more next year.”
For more information on Pietro’s Fight, visit www.pietrosfight.org.