Senator DiSanto’s office issued a press release today about SB 983 – our Senate companion bill to HB 730. We are thankful that he was willing to help us improve … Continue reading Press Release for SB 983
Tag: Newborn Screening
Explaining the Current Newborn Screening System in Pennsylvania
Below is the text of a document I created and have been distributing to legislators to explain (as simply as possible) the way that Newborn Screening works in Pennsylvania currently … Continue reading Explaining the Current Newborn Screening System in Pennsylvania
From Feelings of Defeat to Knowledge and Hope
I began the day feeling somewhat defeated, feeling as though there is nothing more I can do to help HB730 get to the floor. I had a phone call with … Continue reading From Feelings of Defeat to Knowledge and Hope
On the News
Yesterday, one of our local news stations came to interview us about the giraffes we have been collecting, HB730, and Krabbe. You can see the report here. CBS21 has been … Continue reading On the News
Pursuing a Companion Bill in the Senate
I had waited nearly a month for today’s meeting, but it was worth the wait. As you know by now (and if you aren’t aware, you can catch up here), … Continue reading Pursuing a Companion Bill in the Senate
Krabbe Awareness Month: Day Twenty-Eight
See this post for more information on the state of NBS in the U.S.
See babysfirsttest.org to learn more about what is included on your state’s NBS.
Krabbe Awareness Month: Day Twenty-Six
South Carolina passed a bill after this image was created, so they will begin testing in the next 1-2 years.
Indiana expects to begin testing in 2020.
Pennsylvania will hopefully be testing by next year. We have a bill in the legislature (HB 730, numbered for Tori’s birthday) that will make screening equal throughout PA, and Krabbe will become mandatory. If you live in Pennsylvania, please contact your state representatives/senators and ask for their support!
It All Works Together for Good
Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no … Continue reading It All Works Together for Good
Krabbe Awareness Month: Day Twenty-Five
When Tori was diagnosed (February 2015), only two states screened for Krabbe: New York and Missouri. While this is progress, it is happening too slowly. In the meantime, babies are being born with Krabbe and they aren’t being screened. Lives are being lost – lives that should be given the option for transplant, but their ZIP code means they aren’t given that chance.
We won’t stop fighting until screening is equal.
Even So, Joy 