REDONDO BEACH, Calif., April 26, 2011 /PRNewswire-USNewswire/ -- May commemorates National Prader-Willi Syndrome Awareness Month and efforts are already underway to raise awareness of this little-known yet deadly disorder that is the most common genetic cause of obesity in children.
Jessica Patay, mother of a young boy with Prader-Willi syndrome (PWS), decided nine months ago to partner her passion for running with her aspiration to raise awareness of her son's syndrome and funds to help other children with PWS. She and husband Chris registered for the Ragnar Relay, recruited other parents raising a child with PWS, and formed their team, The Missing 15, aptly named because PWS is caused by the lack of expression of genes on the 15th chromosome. On April 14, The Missing 15 ran 30 hours across 202 miles, raising over $20,000 for the Prader-Willi California Foundation.
Jon Gold would have been a member of The Missing 15 had he not already committed to raise awareness of PWS running the London Marathon. Jon completed the 26.2 mile run, cheered on by wife Dr. June-Anne Gold, PWS researcher at Loma Linda University.
Prader-Willi syndrome is a rare, complex medical disorder caused by a defect in a part of the brain that controls muscle development, growth, temperature, sleep, breathing, emotions, and the regulation of appetite. It is the inability to regulate appetite that is PWS's hallmark symptom, causing people to experience an unrelenting drive to eat and horde food. Normal satiety, feeling full after eating, does not exist. The metabolic rate is half what it should be, so people with PWS will gain enormous weight very quickly if food is not restricted with locks and continuous supervision. Without 24/7 supervision the entirety of their lives, people with PWS will die from choking, stomach rupture, or complications caused by morbid obesity. There is no cure for PWS and no known medication controls or even reduces appetite. Researchers believe that studying PWS provides a window of opportunity to find the cure for all obesity.
Walking for Prader-Willi Syndrome events will be held throughout California in May. Says PWCF's executive director Lisa Graziano, "Prader-Willi California Foundation is the only organization focused solely on helping Californians with PWS and their families. We're dedicated to helping people with PWS live meaningful and productive lives." For more information visit www.PWCF.org, call 310.372.5053, or follow www.facebook.com/PWCF1.
Contact: Lisa Graziano, M.A., Executive Director
Prader-Willi California Foundation
SOURCE Prader-Willi California Foundation