Pennsylvania Enacts Wider Newborn Screening Rules

A new law that expands newborn testing to include rare diseases was signed by Pennsylvania Governor Tom Corbett in October. In attendance were Justin Ginion and Vicki Pizzullo, the parents of a child who was diagnosed with Krabbe disease too late for potential treatment. The legislation, which is known as Hannah’s Law, is named after Ginion and Pizzullo’s daughter.

The law requires Pennsylvania hospitals to test newborns for Krabbe disease, along with Fabry disease, Pompe disease, Niemann-Pick disease, Gaucher disease, and Hurler syndrome. Krabbe disease fatally attacks the nervous system, and so far, early intervention has shown to be the only successful treatment. Hannah Ginion was diagnosed with Krabbe disease at 4 months old, already too old to receive a cord blood transplant that could have helped her.

Jim Kelly, the former NFL quarterback, whose son Hunter died of Krabbe disease, said he was thrilled that more children would have “the chance for the healthy life that they deserve” thanks to Hannah’s Law. Kelly’s foundation, Hunter’s Hope, of which Tom and Cynthia Rosicki of Rosicki, Rosicki & Associates, P.C., are longtime supporters, funds research into a cure for Krabbe disease.


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