Summer in the Spotlight by Liz Johnson is the third book in her Prince Edward Island Shores series. From the back of the book: A hurricane may have destroyed her … Continue reading Book Review: Summer in the Spotlight
Book Review: The All-American
The All-American by Susie Finkbeiner weaves together historical events from the 1950s while also telling a beautiful tale of family, truth, and accepting what comes your way. From the back … Continue reading Book Review: The All-American
Book Review: With Every Memory
With Every Memory by Janine Rosche is a beautiful story that draws you into the messiness of life after loss. From the back of the book: Is the life she … Continue reading Book Review: With Every Memory
Book Review: This Is Where It Ends
This is Where It Ends by Cindy K. Sproles is a beautiful story about perspective, the truth, and how the truth impacts our perspective of both the past and the … Continue reading Book Review: This Is Where It Ends
Book Review: The Secret to Happiness
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