Newborn Screening for Krabbe- IMPORTANT ACTION FOR PENNSYLVANIAS

As most of you may know, Pennsylvania passed a law in 2014 to screen babies for Krabbe Disease at birth. It hasn’t been implemented and babies are dying from Krabbe in PA. Victoria “Tori” Brackbill’s (7.30.14 – 3.27.16) parents, Lesa and Brennan, have been trying to change this for a few years. A bill is supposed to be introduced very soon to change Newborn Screening Program in PA and if it passes, Krabbe will then be added to NBS Program in PA. Please read this blog post from Team Tori for more details and if you are in Pennsylvania, be sure to contact your local legislators:

https://thebrackbills.com/2019/03/06/h-b-730-time-to-take-action/.

Thank you!

 

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