In early March I was interviewed by InvestigateTV after speaking with reporter Joce Sherman on the phone a few months earlier. She came to our home, where I thankfully was … Continue reading InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
Our Visit to Forge Biologics
This weekend, our family traveled to Columbus, Ohio in order to visit and present to Forge Biologics – the incredible company with a promising gene therapy for Krabbe Disease in … Continue reading Our Visit to Forge Biologics
Speechless (and a little angry) at the ACHDNC
The ACHDNC decided to not recommend that Krabbe Disease be added to the federal RUSP on Thursday and I’m angry.
The Middle of My Story (Turning Forty)
I used to dread turning forty. It sounded so “old” to me and I couldn’t imagine being in that decade of my life, in what is presumably the middle of … Continue reading The Middle of My Story (Turning Forty)
Your Thoughts May Not Be Your Own
As I continue on through my graduate courses, I’ve been surprised at what I’ve learned that applies to life in general. This week, we were to watch a TEDx talk … Continue reading Your Thoughts May Not Be Your Own
Baby girl, today you should be turning eight. Eight. It is unbelievable that I first held you in my arms that many years ago… …and even more unbelievable that I … Continue reading Eight
Partisanship Through the Lens of Morality
What I have come to see so clearly over the past few years is that this demonization of the other side is unfounded. It has to stop because it’s based on falsehoods and it is ruining us. It is breaking families apart – and the family is the very thing the American Evangelical Church proclaims is their priority. The politics being preached from the Far Right are undoing the very mission of the Church at a record pace.
What Will Be Your Moment?
It was Brennan’s birthday, 2019. I secured a last minute meeting with a very influential person in the Pennsylvania legislature and, despite it being his birthday, Brennan happily stayed home … Continue reading What Will Be Your Moment?
Krabbe Moved Forward to Full Evidence Review
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
A New Chapter Begins
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