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Pajama party will raise money to fight rare disease

Brooklyn Daily
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As far as fund-raisers go, this one will be a sleeper hit.

Ridgites will don their jammies on Dec. 18 to raise money to end the disease that is slowly claiming the life of a local youth.

More than 10 area schools will let students wear pajamas to class if they make a donation to Pietro’s Fight — an organization raising money for research into Duchenne Muscular Dystrophy named for Ridge youngster Pietro Joseph “P.J.” Scarso, who has the rare disease. But you don’t have to be a kid to wear your comfiest PJs all day for a good cause, and one Bay Ridge lawmaker is already on board.

“I’m putting on my pajamas,” said state Sen. Martin Golden (R–Bay Ridge), who is encouraging Ridgites all over to make a donation and rock their sleepwear on Dec. 18.

Pietro’s rare disease leads to muscle degradation, and ultimately death. People with Duchenne Muscular Dystrophy do not produce a protein that provides structural support to muscle cells. Typically only boys exhibit symptoms, though women can carry the gene, and the disease results in a slow loss of muscle function and eventually death — usually before the age of 30.

There are eight different drugs in trials to treat the disease or complications arising from it, but nothing is available to the public, said Pietro’s dad and organization co-founder Manni Scarso. Researchers are on the cusp of breakingthrough — one drug called Eteplirsen is in the second phase of a three-phase clinical trial and shows promising results, Scarso said.

But getting pharmaceutical companies to research cures to a disease that affects just one in 3,600 boys is tough, because the drugs will never make them a lot of money, Golden said.

The Scarso family’s organization has raised about $800,000 since 2012 — sending most of the money to researchers vetted by an umbrella organization called the Duchenne Alliance.

Pietro’s Fight gives researchers money to promote a treatment in the absence of more backing from major pharmaceutical companies, said mom Dayna Scarso.

“You wouldn’t believe what giving these companies $100,000 or $200,000 can do,” she said.

Reach reporter Max Jaeger at mjaeger@cnglocal.com or by calling (718) 260–8303. Follow him on Twitter @JustTheMax.
Updated 11:48 am, January 16, 2019
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