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
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
The ACHDNC decided to not recommend that Krabbe Disease be added to the federal RUSP on Thursday and I’m angry.
One of the most incredible things that came from stepping out of partisanship has been the ability to look at issues with a fresh perspective, without party rhetoric ringing in … Continue reading There are Education Problems to Solve in Pennsylvania
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)
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
I recently had the opportunity to speak during a Life Sciences PA event geared toward Patient Advocacy Groups. I was asked to share about my experience with SB983 and my … Continue reading Where the Solutions Are Found
We always teach our children to be good sports, to compromise, and to resolve disagreements, but then we, as adults, do the opposite, especially when it comes to political beliefs. Why do we do this? Why do we perpetuate the very characteristics we seek to train out of our children? Even worse, we justify it with questionable arguments.
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
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.
Even So, Joy 