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
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.