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
Category: Hope
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
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.
There are Education Problems to Solve in Pennsylvania
One of the most incredible things that came from stepping out of partisanship has been the ability to look at issues with a fresh perspective, without party rhetoric ringing in … Continue reading There are Education Problems to Solve in Pennsylvania
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)
Your Thoughts May Not Be Your Own
As I continue on through my graduate courses, I’ve been surprised at what I’ve learned that applies to life in general. This week, we were to watch a TEDx talk … Continue reading Your Thoughts May Not Be Your Own
Where the Solutions Are Found
I recently had the opportunity to speak during a Life Sciences PA event geared toward Patient Advocacy Groups. I was asked to share about my experience with SB983 and my … Continue reading Where the Solutions Are Found
“What Happened to Her?”
We always teach our children to be good sports, to compromise, and to resolve disagreements, but then we, as adults, do the opposite, especially when it comes to political beliefs. Why do we do this? Why do we perpetuate the very characteristics we seek to train out of our children? Even worse, we justify it with questionable arguments.
Even So, Joy 