The Secret to Happiness by Suzanne Woods Fisher is the second in her Cape Cod Creamery series. I had enjoyed the first book in this series so I was excited … Continue reading Book Review: The Secret to Happiness
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
Out of Control
Yesterday was the seventh anniversary of Tori’s death, caused by something we couldn’t stop or control. Yesterday, three sets of parents lost their children to something they couldn’t stop or … Continue reading Out of Control
Book Review: The Sound of Light by Sarah Sundin
From the back of the book: When the Germans march into Denmark, Baron Henrik Ahlefeldt exchanges his nobility for anonymity, assuming a new identity so he can secretly row messages … Continue reading Book Review: The Sound of Light by Sarah Sundin
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
Book Review: Everything is Just Beginning
This is my second Erin Bartels book and it won’t be my last. Everything is Just Beginning is a marvelous story that weaves together relatable situations, historical events, and music … Continue reading Book Review: Everything is Just Beginning
Book Review: Grace in the Gray
It’s no secret that I have been practicing the art of “listening to understand” for a couple of years now. So, when an opportunity arose to review the book “Grace … Continue reading Book Review: Grace in the Gray
Even So, Joy 