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Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20170&cosponId=21647
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House of Representatives
Session of 2017 - 2018 Regular Session

MEMORANDUM

Posted: December 29, 2016 09:02 AM
From: Representative Tina M. Davis
To: All House members
Subject: Resolution Designating January 15, 2017, as “Krabbe Disease Awareness Day”
 
In the near future, I will introduce a resolution designating January 15, 2017, as “Krabbe Disease Awareness Day” in Pennsylvania.

Krabbe disease is an inherited, often fatal disorder affecting the nervous system. It is caused by the deficiency of an enzyme called galactosylceramidase. This enzyme is essential for the growth and maintenance of myelin — the protective covering around nerve cells. According to the Mayo Clinic, Krabbe disease affects about 1 in every 100,000 people in the United States and there is no known cure. In most cases, it develops in infants before 6 months of age and the disease usually proves fatal by age 2. Krabbe disease can occur in childhood, adolescence and adulthood, but is less common and symptoms may vary significantly.

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 co-sponsoring this resolution.