“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
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!
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
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!
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
Today Caleb broke the handle off of my favorite coffee mug. This mug was given to me while Tori was sick and I love that it has both giraffes and … Continue reading Strength & Scars
I knew that we would have many practical tasks to handle once we found out that our embryo transfer had failed. A failed transfer meant that our family was complete … Continue reading Sometimes Grief Looks Like Clothing
A friend recently asked me a two-part question that I have been pondering for days now. She asked: “How has your story of walking through lament – and joy in … Continue reading Lament and Joy
I wrote these words exactly one month ago and I’ve been pondering them, again, over the past three days as we adjust to our new reality: I’ve been struggling lately … Continue reading Expectations and Reality
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