The Jackson Project

Krabbe Disease, one of many forms of Leukodystrophy is a very rare genetic disease. Most people have never heard about it. Our goal is to change that! However, our work doesn’t stop here. In addition to raising awareness about these rare genetic disorders and the impact they have on affected children and their families, the organization aims to educate parents on the critical role that newborn screening plays in detecting and treating them in time to prevent irreversible damage and even death. Newborn screening varies by state, and this leaves children vulnerable to a disease going undetected until it’s too late. We want to make sure every parent is provided the opportunity to make fully informed decisions around their child’s screening, potential need for supplemental screening, and treatment options in the event a positive screen is returned.

Check back frequently! As we build out this program we’ll update this page with all of our progress!