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
Tag: Leukodystrophy
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
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)
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
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
Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP
Good afternoon. My name is Lesa Brackbill and my daughter, Victoria, died from Krabbe Disease in 2016. I can assure you that I speak today from more than just the … Continue reading Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP
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
Speechless (and a little angry) at the ACHDNC
The ACHDNC decided to not recommend that Krabbe Disease be added to the federal RUSP on Thursday and I’m angry.
Eight
Baby girl, today you should be turning eight. Eight. It is unbelievable that I first held you in my arms that many years ago… …and even more unbelievable that I … Continue reading Eight
Krabbe Moved Forward to Full Evidence Review
Today is a big day for the Krabbe community! The committee (HRSA) that decides which conditions are added to the federal Recommended Uniform Screening Panel (RUSP) voted UNANIMOUSLY today to … Continue reading Krabbe Moved Forward to Full Evidence Review
Even So, Joy 