I’ve been doing a lot of writing lately because it is therapeutic during a time of such chaos in our country and in the Rare Disease space. We have experienced … Continue reading Advocacy Work is Not for the Faint of Heart
Category: Politics
The Cost of Peace
It’s ironic that as I went public about my journey to nonpartisanship, my deconstruction of evangelicalism, and the internal peace that has come from these two things, I have made … Continue reading The Cost of Peace
It’s the Dress Debate (but with Politics this time)
Do you remember the blue and black dress that went viral in 2015? Some saw it as blue/black while others saw white/gold. We were all looking at the same picture, … Continue reading It’s the Dress Debate (but with Politics this time)
No One Wants to Be in a Cult, Do They?
If you were in a cult, would you want to know? And if you did find out that you were, what would you do with that information? I was taught … Continue reading No One Wants to Be in a Cult, Do They?
Principle Over Party
Five years ago today, I experienced a moment that changed so much for me. I can rarely pinpoint moments that are catalysts for personal change, but this one was clear, … Continue reading Principle Over Party
InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
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
Out of Control
Yesterday was the seventh anniversary of Tori’s death, caused by something we couldn’t stop or control. Yesterday, three sets of parents lost their children to something they couldn’t stop or … Continue reading Out of Control
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
There are Education Problems to Solve in Pennsylvania
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
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)
Even So, Joy 