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
Vulnerability and Impact
Our neighbors lost three trees last week. Three beautiful, tall, shade-giving trees. Storm damage revealed that the trees were dying and there was no choice but to remove them all. … Continue reading Vulnerability and Impact
The Way Family Should Be
Note: this post is discussing my family and no one else. The praise of my family is not a slight to anyone else, though I believe it’s an example we … Continue reading The Way Family Should Be
Silhouettes & Moments (a poem)
It has been years since I last wrote a poem. A few days ago, this wrote itself in my mind after experiencing being left out (once again), and I decided … Continue reading Silhouettes & Moments (a poem)
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)
How Listening to Understand Transformed My Advocacy Efforts
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
Even So, Joy 