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Apr. 2015 - Hunter's Hope Foundation Hires New Chief Operating Officer

Sampier Family_2015

The Hunter’s Hope Foundation announced the addition of its new Chief Operating Officer, Dennis Sampier, former vice president of community relations for the NBA Detroit Pistons and executive director of the team’s Come Together Foundation, in Auburn Hills, MI.  Sampier brings a wealth of professional knowledge to Hunter’s Hope, but his personal experience as a father of a child with special needs is what truly sparked his interest in the Foundation.

“After my son was diagnosed with autism in 2005, my wife and I experienced a deep sense of hopelessness and grief,” Sampier explained. “Not that I would ever claim to know exactly what families affected by Leukodystrophies endure, but I understand the tremendous impact caring people can make when they come together to make a positive difference for a child and their family in need.”

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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

 

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