Lawmakers, parents, and an NFL Hall of Famer pushing for expansion of newborn screening in Pennsylvania known as Hannah’s Law. They all gathered at the capitol today to make the case for early screening in newborns for lysosomal storage disorders like Krabbe Disease. Hannah’s Law would add these disorders to the list of genetic diseases that hospitals must screen for in Pennsylvania.
Parents of children with Krabbe shared their struggles with the disease and the importance of early detection including Hannah Ginion’s mother.
“ Most parents with babies Hannah’s age are planning first birthday parties. I can’t help but wonder if we will be planning her funeral. All of this could have been prevented at birth, ” says Vicki Pizzullo, Hannah’s mothe
Lawmakers say they met with the Governor this morning and hope to get the bill passed in the near future