This article and other news can be found in the latest issue of our newsletter which can be downloaded/viewed here: February 2021. In May, BPANready turned 2 years old! It has been the fastest enrolling of our natural history studies. We broke 100 participants in last February 2020! We have also received 69 research blood […]

A recent scientific paper (linked below) reports that PLAN is associated with ceramide accumulation in a fruit fly model of this disorder. Ceramide is a type of fat (lipid) used widely in the body, especially in the membranes of cells. The authors report that accumulation of ceramide in the nervous system puts stress on an […]

We are excited to have BPAN families participate in this important natural history study of BPAN that will help lay the foundation for future clinical trials. The link below will take you to a landing page that explains more about how the study works and what is involved. After you look it over, click on […]

This article and other news can be found in the latest issue of our newsletter which can be downloaded/viewed here: April 2018. Back in April 2015, the very first beta-testers started participating in our online natural history study, PKANready. These early testers helped us work out the bugs and finalize the design before the full […]