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Oct. 2014 - PA Legislature Passes Hannah's Law Mandating Newborn Screening for Krabbe and Similar Disorders

Hannah's LawBy a unanimous vote, Pennsylvania state senators passed Hannah’s Law (HB 1654), a bill mandating newborn screening for Krabbe and five similar disorders. The bill is named in honor of Pennsylvania’s Hannah Ginion, who is affected by Krabbe Leukodystrophy, but was diagnosed after the disease was too far progressed for the only available treatment. The bill officially became law when signed by Governor Tom Corbett.

In addition to the 33 diseases currently on the state’s newborn screening panel, Hannah’s Law mandates that all babies born in Pennsylvania undergo newborn screening for Krabbe Disease and five other Lysosomal Storage Disorders – Fabry, Gaucher, Pompe, Niemann-Pick A/B and Hurler’s Syndrome.

Read More About HB 1654      Read More About the Signing of Hannah's Law


Jan. 2014 - Hunter James Kelly Research Institute Shows  How Different Variations of Krabbe Disease Correlate with MRI Results

MRI & Jacqueline ScottResearch findings recently published in the Journal of Pediatric Neurology show that magnetic resonance imagining (MRI) abnormalities, when considered with typical clinical signs and symptoms of Krabbe Disease, are indicative of specific disease outcomes. These findings should help promote earlier diagnosis of later onset forms of the disorder, thus facilitating timely treatment.

“Our study confirms the existence of distinct age-related differences in the appearance of MRI scans, especially amongst different versions of the disease: early infantile, later onset, and adolescent/adult,” shared Patricia Duffner, MD, co-author of the study and Founding Director of the Hunter James Kelly Research Institute.

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