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
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
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
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
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
Hi, it’s been a while. I’ve been very busy with Newborn Screening advocacy/travel for LDNBS, where I am now the Director of Advocacy, and I’m still working on my Master’s … Continue reading How Listening to Understand Transformed My Advocacy Efforts
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.
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
I wrote this Tweet a little over a month ago as a quick expression of a much deeper conversation happening within my mind. The longer I have been removed from … Continue reading You Are Probably Being Manipulated
I have found myself so much more at peace since discovering this truth: The other party isn’t my enemy, isn’t out to destroy our country, and isn’t evil. It’s so … Continue reading Maybe there’s little to fear…
“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