Source: Prader-Willi California Foundation
Most parents wish that their kids would “eat more”. The familiar scene of a family mealtime, or even more specifically a birthday party, where food is all around and easily available, is usually where you would expect to see children and youth being repeatedly asked to “sit down and eat”.
This is not the case with a child with Prader-Willi Syndrome (PWS). Imagine never feeling full no matter how much you eat, and needing constant supervision to prevent you from eating yourself to injury or even death. Where food at a social gathering is normally a part of joy and celebration, it is instead the source of anxiety and dread. This is the life of a person with PWS. Prader-Willi Syndrome is a complex disorder that impairs growth, causes weak muscles, developmental delays, and severe behavioral symptoms similar to Autism. However, its hallmark and most life-limiting symptom is an insatiable appetite no matter how much food is eaten.
Unmanaged, PWS causes morbid obesity and premature death. PWS is not an eating disorder; it results from missing genes. No known medication controls or even reduces the drive to eat. People with PWS cannot live independently. Without 24/7 supervision for the entirety of their lives they
will die prematurely as a result of choking, stomach rupture, or from complications caused by their behavior or morbid obesity. Parents and care providers of someone with PWS experience some of the highest levels of stress.
Today there is hope. With an accurate diagnosis and appropriate supervised care, people with PWS can live healthier and happier lives.
Prader-Willi California Foundation is holding its 2018 PWCF Charity Golf Tournament event on March 10th at the Sand Canyon Country Club in Santa Clarita. Proceeds from this year’s event will go towards scholarships for sending youth with PWS to a special summer camp. Registration
begins at 7:30 am; the shotgun start is at 9:00 am; the fun lasts until 2:00 pm. Golfers are invited to enjoy a continental breakfast and BBQ lunch, fun contests and raffles, a silent auction, and refreshments throughout the course.
Non-golfers and family members of golfers can purchase tickets to attend the luncheon and raffles/auction, and have a chance to take part in a free golf clinic hosted by the club pro, as well as games, arts & crafts, and movement activities hosted by Mindful Movement Center for Dance. Event sponsors include Henry Mayo Newhall Hospital, Premier America Credit Union, and Behavioral Learning Center. The celebrity guest for this year’s event
will be Dave Shelton, award winning writer/author from Everybody Loves Raymond and creator of the Special Olympics theme song. Come on out for a great day and be a part of something big and meaningful!
Prader-Willi California Foundation, a 501(c)(3) organization, provides assistance to individuals and families affected by PWS in the Santa Clarita Valley and throughout California. They are the only organization in California dedicated solely to providing education, support and advocacy
services to people with PWS, their families, and professionals. For more information and to register, sponsor, or donate visit www.pwcf.org or call Rodney at 818-723-2656. Visit us on Facebook at 2018PWCFGolf.
