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
Tag: Tori
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.
The Middle of My Story (Turning Forty)
I used to dread turning forty. It sounded so “old” to me and I couldn’t imagine being in that decade of my life, in what is presumably the middle of … Continue reading The Middle of My Story (Turning Forty)
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
A New Chapter Begins
If you had asked me three days ago if I would ever go to grad school, I would have said no. I’ve thought about it off and on since I … Continue reading A New Chapter Begins
Even So, Joy 