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House Co-Sponsorship Memoranda
House of Representatives
Session of 2015 - 2016
Regular Session
MEMORANDUM
| Posted: | February 23, 2015 12:46 PM |
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| From: | Representative Angel Cruz |
| To: | All House members |
| Subject: | Resolution Designating April 2015 as “Krabbe Disease Awareness Month” |
| On Sunday December 28, 2014, Hannah Ginion, who inspired my legislation to expand newborn screening in Pennsylvania, passed away less than a month shy of her second birthday. Hannah had Krabbe disease (pronounced Crab A), which 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. Regrettably, due to a lack of mandatory screening for Krabbe and other Lysosomal Storage Disorders (LSDs) at the time of her birth, Hannah’s parents, Justin and Vicki, did not have the opportunity to have Hannah diagnosed early. Thanks to Hannah’s story and unceasing advocacy by her family and other families of children with Krabbe disease, my legislation (Act 148 of 2014), which requires hospitals in Pennsylvania to screen newborns for Krabbe and five other LSD’s, became law in October. This law is Hannah’s legacy. As part of my continued advocacy on behalf of children like Hannah and their families, 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 and all Pennsylvania children affected by Krabbe disease, by co-sponsoring my resolution to declare April 2015 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. |
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Introduced as HR147