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

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
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
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
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
When Tori passed away, Brennan and I made a commitment to always making March 27th a special, joy-filled day. After all, she’s having fun, so why shouldn’t we? We usually … Continue reading Six Years – Celebrating Tori
Six years ago today (at 9:05am) we said farewell to our beautiful daughter. That day, we went through the motions of implementing the decisions made months before – unwanted tasks … Continue reading Six Years – The Impact
As the sixth anniversary of Tori’s death quickly approaches (Sunday), and with the passing of my friend’s daughter Calliope yesterday, I have been reflecting a great deal on the beauty … Continue reading Triumph and Purpose After Tragedy
I’ve been struggling for months. Even worse, it has taken me until very recently to put a name to the struggle. About two weeks ago I figured it out and … Continue reading Naming the Struggle
“I know more about Krabbe than I’ll ever know about Collin.” Kevin Cushman My friend, Kevin, made this statement at a recent Krabbe panel in which we both participated and … Continue reading There are Stories to Tell and Lives to Save
I’ve felt compassion for – and grace toward – many decision-makers in our country lately. There’s one in particular with whom I feel a kinship of sorts because of how … Continue reading Being Misunderstood & Offering Grace