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House Co-Sponsorship Memoranda
House of Representatives
Session of 2013 - 2014
Regular Session
MEMORANDUM
| Posted: | September 10, 2013 03:57 PM |
|---|---|
| From: | Representative Tina M. Davis |
| To: | All House members |
| Subject: | Resolution to proclaim January 15th, 2014 as “Krabbe Disease Awareness Day” |
| In the near future, I will introduce a resolution proclaiming January 15th, 2014 as “Krabbe Disease Awareness Day” in Pennsylvania. Krabbe Disease is an inherited, often fatal disorder affecting the central nervous system. Krabbe disease is caused by a genetic defect that results in a deficiency in an enzyme called galactocerebrosidase. This enzyme is essential for the maintenance of myelin — a fatty substance that insulates your nerve fibers. The disease affects about 1 in every 100,000 people in the United States. In most cases, Krabbe disease 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, I have a young constituent, Hannah Pizzullo, who suffers from Krabbe Disease. Hannah’s condition has inspired many across Pennsylvania, which has resulted in the introduction of legislation by Rep. Cruz, which will add Krabbe disease to the Newborn Child Testing Act. In order to further the cause and raise awareness, I chose Hannah’s birthday, January 15th, 2014, as “Krabbe Disease Awareness Day” in Pennsylvania as she will be celebrating her first birthday on that date. Please consider joining me in my effort to raise awareness of the impact of this terrible disease. |
Introduced as HR484