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House of Representatives
Session of 2015 - 2016 Regular Session

MEMORANDUM

Posted:	January 7, 2015 10:21 AM
From:	Representative Tina M. Davis
To:	All House members
Subject:	Resolution Designating January 15th, 2015, as “Krabbe Disease Awareness Day” in Pennsylvania.

In the near future, I will introduce a resolution proclaiming January 15th, 2015, as “Krabbe Disease Awareness Day” in Pennsylvania. Krabbe disease is an inherited, often fatal disorder affecting the central nervous system. It is caused by a genetic defect that results in a deficiency in an enzyme called galactosylceramidase. This enzyme is essential for the maintenance of myelin — a fatty substance that insulates your nerve fibers. Krabbe disease affects about 1 in every 100,000 people in the United States. In most cases, it develops in infants before 6 months of age, which is known as early-onset Krabbe disease. Late-onset Krabbe disease develops later in childhood or in adolescence. According to the Mayo Clinic, the younger the age that Krabbe disease occurs, the faster it progresses. As you may be aware, Hannah Ginion, a young constituent in my district who suffered from Krabbe disease, tragically passed away on December 28, 2014. Hannah’s condition inspired many across Pennsylvania to take action. In her memory, we must continue to further the cause and raise awareness of Krabbe disease. Please consider joining me in my effort to raise awareness of the impact of Krabbe disease.

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