In September, I was told it was “improbable but not impossible” to see SB983 progress because of our many delays (and a global pandemic). I took that as a challenge. … Continue reading Signed by Governor Wolf
Category: Newborn Screening
Sweet Relief
This spreadsheet has been part of my daily life for over four years. I meticulously gathered contact info for all 253 elected officials, kept track of committees, when I contacted … Continue reading Sweet Relief
SB983 – PASSED UNANIMOUSLY!
Even just two weeks ago I was seriously questioning the outcome of SB983. I felt so uncertain after it seemingly became a partisan issue in the Human Services committee, and … Continue reading SB983 – PASSED UNANIMOUSLY!
SB983 – Out of House Human Services Committee
I was not adequately prepared for the level of stress and frustration that accompanied today’s proceedings. We knew that the Department of Health had been “shopping around” their amendments and … Continue reading SB983 – Out of House Human Services Committee
SB983 – Unanimous Senate Passage, Now to The House
I’m exhausted. Tuesday was a day of great celebration as SB983 passed the Pennsylvania Senate unanimously. Even getting to the floor was a serious accomplishment and I’m so grateful for … Continue reading SB983 – Unanimous Senate Passage, Now to The House
SB983 – Moving to the Floor
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
Differences Make Us Better
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
Press Release for SB 983
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
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
Even So, Joy 