Today is a big day for the Krabbe community! The committee (HRSA) that decides which conditions are added to the federal Recommended Uniform Screening Panel (RUSP) voted UNANIMOUSLY today to … Continue reading Krabbe Moved Forward to Full Evidence Review
If you had asked me three days ago if I would ever go to grad school, I would have said no. I’ve thought about it off and on since I … Continue reading A New Chapter Begins
Six years ago today (at 9:05am) we said farewell to our beautiful daughter. That day, we went through the motions of implementing the decisions made months before – unwanted tasks … Continue reading Six Years – The Impact
As the sixth anniversary of Tori’s death quickly approaches (Sunday), and with the passing of my friend’s daughter Calliope yesterday, I have been reflecting a great deal on the beauty … Continue reading Triumph and Purpose After Tragedy
I’ve been struggling for months. Even worse, it has taken me until very recently to put a name to the struggle. About two weeks ago I figured it out and … Continue reading Naming the Struggle
“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
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
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!
Even So, Joy 