Update on the boys (and a little venting): Because I’m ever the advocate, I wanted to share/vent about the difficulties we’ve been having with the boys and their hearing and … Continue reading Advocacy Never Ends
Category: Motherhood
Public Comments to the ACHDNC regarding Krabbe Disease Newborn Screening
This afternoon, the ACHDNC will vote on whether or not to add Krabbe disease to the federal Recommended Uniform Screening Panel (RUSP). Here are the written comments I submitted: Dear … Continue reading Public Comments to the ACHDNC regarding Krabbe Disease Newborn Screening
Looking Back at 2023 (Our Christmas Letter)
It has been a wild year for our family in many ways, both good and less-than-ideal. 2023 was filled with new challenges, most of which we have chosen to not … Continue reading Looking Back at 2023 (Our Christmas Letter)
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
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
Comparison in Motherhood
I saw a post on Facebook today that made me feel many things all at once. It was a post by a mom in a large Facebook group known for … Continue reading Comparison in Motherhood
Even So, Joy 