“I know more about Krabbe than I’ll ever know about Collin.” Kevin Cushman My friend, Kevin, made this statement at a recent Krabbe panel in which we both participated and … Continue reading There are Stories to Tell and Lives to Save
Tag: Krabbe
Being Misunderstood & Offering Grace
I’ve felt compassion for – and grace toward – many decision-makers in our country lately. There’s one in particular with whom I feel a kinship of sorts because of how … Continue reading Being Misunderstood & Offering Grace
Act 133 of 2020: Implemented!
I’ve already posted about this on social media and on LDNBS.org but it felt necessary to also include it here because this is a monumental day. Today Pennsylvania became the … Continue reading Act 133 of 2020: Implemented!
Signed by Governor Wolf
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
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 – 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
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
Nineteen Months & Twenty-Eight Days
Sometimes I just don’t know what to say. I’ve had nearly twenty months to prepare and yet I’m still not sure what to write. I’ve felt some self-imposed pressure to … Continue reading Nineteen Months & Twenty-Eight Days
