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: Tori
2024 in Review: Personal & Advocacy-Related
This year marked my fifth year in advocacy as a career, and it was the most fulfilling year to date. I not only grew personally and professionally, but I made … Continue reading 2024 in Review: Personal & Advocacy-Related
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!
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
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
Community Stories: Tori
Last November, Forge Biologics (the company with a gene therapy for Krabbe Disease in clinical trials) came to our home to film our story, and it was released today. It … Continue reading Community Stories: Tori
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
Even So, Joy 