Help Fight Prader-Willi Syndrome With This Saturday’s Halloween 13K in Endicott
Ellie Johnson was diagnosed with Prader-Willi Syndrome, or PWS at age 2 in 2009. PWS is a rare genetic disorder that is due to a abnormality in the 15th chromosome, that causes an excessive preoccupation with food, which can cause obesity-related health problems. Hypotonia (sometimes called “floppy baby syndrome”), small stature, cognitive delays, and other developmental disabilities are also associated with PWS. As with many rare disorders, information and funding for research can be in short supply, which is why Ellie's family created Team HopeFull, and is having this Saturday's Halloweed 13K in Endicott, to raise money for PWS research, support and to fund grants for families living with PWS.