Krabbe disease needs to be treated BEFORE the onset of symptoms, which means newborn screening of Krabbe disease is critical for life! A newborn screening test, using the few drops of blood obtained in the hospital from the required heel prick, can detect Krabbe disease early in a baby’s life, providing the possibility for treatment such as stem cell transplantation. Just like Judson, a Krabbe baby will appear healthy at birth and possibly for several years, yet, in fact, have a heinous genetic disorder lurking in their system…then one day it devastatingly appears. However, newborn screening of Krabbe disease can give those children a chance at life. The states that currently screen for Krabbe disease include:
- New York since 2006
- Missouri since 2012
- Kentucky since 2016
- Illinois, Louisiana, New Jersey, New Mexico, Ohio, Pennsylvania, and Tennessee
- These states have passed legislation to screen for Krabbe disease but the programs have yet to be implemented.
Pregnant? Want Your Baby Screened for Krabbe?
If you’re having a baby in a state or country that doesn’t screen for Krabbe disease, you can order a supplemental screening kit for your child. The kit includes instructions on how to coordinate with your physician to implement the test. There are two options:
- The Lysosomal Storage Disorder (LSD) Screening Packect
- Detects Krabbe, Gaucher, Niemann-Pick A/B, Pompe, Fabry, and MPS I
- Step One/LSD Screening Packet
- Identifies a baby’s risk for more than 50 metabolic disorders along with Krabbe disease and other lysosomal storage disorders.
Judson’s Legacy Advocating For Newborn Screening
Judson was born in California where they do not currently screen newborns for Krabbe disease. Judson’s Legacy has been working with legislators in the state of California to implement newborn screening for Krabbe. SB 224 was a 2013 Senate Bill that would have funded a pilot program for newborn screening of Krabbe disease in Orange County, California. It passed unanimously through the entire CA Senate and the Assembly Health Committee but was held in suspense in the Assembly Finance Committee and died later in the year. Your donations enable Judson’s Legacy to continue advocating for newborn screening.