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12/01/2020 07:33 AM
Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20170&cosponId=25994
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House of Representatives
Session of 2017 - 2018 Regular Session

MEMORANDUM

Posted: June 7, 2018 03:58 PM
From: Representative Angel Cruz
To: All House members
Subject: Resolution Designating September 2018 as “Krabbe Disease Awareness Month”
 
I plan to introduce a resolution designating September 2018 as Krabbe Disease Awareness Month” in Pennsylvania.

Globoid Cell Leukodystrophy, commonly known as Krabbe disease (pronounced Crab A), is an inherited degenerative disorder that affects the nervous system. Infants born with the disorder appear normal at birth before symptoms begin between the ages of 3 and 6 months. A study by the Mayo Clinic established that early detection of Krabbe disease may delay its onset when treatment is given before symptoms begin.

You may recall that my legislation (Act 148 of 2014), which became law in October 2014, expanded the list of diseases for which newborns are to be screened to included Krabbe because of the importance of early detection.

As part of my continued advocacy on behalf of the children and families affected by this disease, I am introducing a resolution to raise awareness about Krabbe disease and the importance of early detection through screening. It is essential that we inform our citizens, especially those who have recently had or are planning to have children, of the importance of testing newborns for this disease.

As I have mentioned before, awareness is key to providing our children with a better chance at a healthy life. Please join me in honoring the lives of Hannah Ginion, Jaylah Donaire-Bechtel, Tori Brackbill and all Pennsylvania children affected by Krabbe disease, by co-sponsoring my resolution to declare September 2018 as “Krabbe Disease Awareness Month” in Pennsylvania. Thank you in advance for your consideration.

If you have any questions or concerns, please contact my Harrisburg office at 717-705-1925.



Introduced as HR1015