It’s been a very long ten days. Ten days ago we weren’t sure if SB983 (our Newborn Screening Legislation) was going to have a fighting chance this session. Ten days … Continue reading SB983 – Moving to the Floor
If you had told me twenty years ago that one of my favorite people now would be a Liberal (gasp!), I would have laughed. I would have told you that … Continue reading Differences Make Us Better
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
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
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
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!
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
(Hover over – or tap on – each state to see how many diseases are included on their NBS tests)
September is Newborn Screening Awareness month so we will be providing information throughout the month about Newborn Screening (NBS).
Here’s a brief introduction:
Newborn Screening is a crucial component of ensuring the health of all newborns, yet many parents have no idea what is being done when the test happens.
Newborn Screening (NBS) happens between 24-48 hours of birth and it involves the pricking of the baby’s heel in order to apply blood to special paper (filter paper). The blood is used to test for treatable conditions – conditions for which timing is everything.
Did you know that each state screens for a different number of diseases?
I created the interactive map above to visually demonstrate the discrepancy from state to state, or you can see the chart below. I obtained all of this data from babysfirsttest.org on August 31, 2019.
|State Name||Number of Diseases Screened|
|District of Columbia||62|
According to BabysFirstTest.org there are 80 treatable conditions that could be screened for at birth, but no state screens for all 80. Visit their site to learn more about what diseases are included on your state’s NBS.
This means that your ZIP code determines life or death if you are born with one of these screenable/treatable diseases.
Where you live should not decide whether you live or whether you die. – U2
There is a national panel called the Recommended Uniform Screening Panel, or the RUSP, and there are currently 35 diseases on the RUSP. Many states screen for all of these diseases but not all.
As you can see, there’s a lot of work to be done in the realm of Newborn Screening to ensure that every child is screened equally for all diseases, including Krabbe. One thing you can do is contact your legislators to ask them to take NBS seriously and work on increasing your state’s screening panel.
Comment below with any questions, comments, etc. Do you remember when your child was screened? Did you know what was happening?