I have spent the past ten years advocating in honor of Tori, to build a legacy for her, and I have succeeded. Because of Tori, babies in Pennsylvania are screened … Continue reading New Adventure Ahead
Category: Hope
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
Perception and Reality
I recently noticed that I have a “three-star” rating for my book. Just one. No review, no explanation. Just a rating of three stars out of five. Out of 95 … Continue reading Perception and Reality
Ten Candles, Endless Hope – ONLINE AUCTION Info!
We posted last month about our upcoming fundraiser for KrabbeConnect in Tori’s honor – we’re calling it Ten Candles, Endless Hope because she would have turned TEN this year. Since … Continue reading Ten Candles, Endless Hope – ONLINE AUCTION Info!
Maybe We Need to Get Out More
Traveling outside of the United States to experience a different culture should be a required activity for American citizens. We live in a bubble here, mostly comfortable, with many feeling … Continue reading Maybe We Need to Get Out More
Ten Candles, Endless Hope: Tori’s Birthday Benefit to #CureKrabbe
In just six weeks, we will be celebrating Tori’s TENTH birthday! Yes, her birthday is actually July 30th, but we wanted to do something extra special for this milestone year, … Continue reading Ten Candles, Endless Hope: Tori’s Birthday Benefit to #CureKrabbe
Tori’s Tenth Birthday Celebration
On July 30, 2024, Tori would be turning ten years old. We decided this was a great excuse to celebrate her by continuing her impact, and we decided to do … Continue reading Tori’s Tenth Birthday Celebration
From Diagnosis to Determination
Today marks nine years since Diagnosis Day, the worst day of our lives by far. There are no adequate words to describe the utter desperation and helplessness we felt as … Continue reading From Diagnosis to Determination
Public Comments to the ACHDNC regarding Krabbe Disease Newborn Screening
This afternoon, the ACHDNC will vote on whether or not to add Krabbe disease to the federal Recommended Uniform Screening Panel (RUSP). Here are the written comments I submitted: Dear … Continue reading Public Comments to the ACHDNC regarding Krabbe Disease Newborn Screening
Looking Back at 2023 (Our Christmas Letter)
It has been a wild year for our family in many ways, both good and less-than-ideal. 2023 was filled with new challenges, most of which we have chosen to not … Continue reading Looking Back at 2023 (Our Christmas Letter)
Even So, Joy 