May is Prader-Willi Syndrome Awareness Month and the Prayer Will Support PWS Organization is holding a walk-a-thon Saturday. Click to hear KMZU’s Chris Perkins talk with Parent Krystal Ellington:
Press Release from Prayer Will Support PWS Organization
Corder, MO – The Prayer Will Support PWS Organization invites everyone to join them in a Walk-a-Thon on April 30th at 10:00 am to raise awareness and funds to help provide more research for Prader-Willi Syndrome. May is Prader-Willi Syndrome Awareness Month. The Prayer Will Support PWS Organization calls upon Government officials, businesses, communities, health care professionals, educators, volunteers, and all the people of the states of Missouri and Kansas to continue…strong commitment to advancing awareness of and research for finding a cure for Prader-Willi syndrome. PWS wareness Month, a public education initiative launched by the Prader-Willi Syndrome Association (USA) (PWSA (USA)), focuses the spotlight on Prader-Willi syndrome (PWS), the most common known genetic reason for life-threatening obesity. PWS Awareness Month helps to save lives.
PWS is a complex syndrome affecting appetite, growth, metabolism, cognitive function and behavior. It is estimated that PWS occurs in one of 12,000 to 15,000 births and that approximately 75% of those who have PWS in the United States are still unknown to PWSA (USA), including those in the state of
Missouri and Kansas. Many people are living with this genetic disorder and do not know they have it and their doctors do not know about it to test for it.
PWS is a two-stage syndrome: 1) infancy is described as “failure to thrive,” followed by 2) “thriving too well,” typically beginning from age three to five. Parents have a difficult time getting their babies to eat because of hypotonia (low muscle tone). Babies are often described as ‘rag dolls’—they typically do not cry and can sleep close to 24 hours a day. Parents are usually elated when in toddler years, their child gains strength and expresses an interest in food, only to realize a short time later that the child will not stop eating and seeks food constantly. That is because those who have PWS have a genetic drive to eat because their brain constantly signals to them they are very hungry. It is not a psychologically based phenomenon; it is a very serious and life-threatening medical condition that is involuntary and uncontrollable.
The hunger drive is further compounded by a dysfunction in the metabolic system, whereby those with PWS gain weight rapidly on very few calories. Without intervention, those with PWS will most likely die by early adulthood. Intervention includes strict external controls such as padlocking refrigerators and pantries to protect those with PWS from consuming life-threatening amounts of food and the need for 24-hour supervision to keep them from food. The syndrome affects both males and females and all ethnic groups equally. A blood withdrawal with a DNA test is all that is needed for a diagnosis, and a beginning to dealing with a complicated syndrome that has treatments, though no cure…yet. It is believed that research into PWS is a window of opportunity to understanding obesity in the general population.
Prayer Will Support PWS Organization through its First Annual Walk-a-Thon in Higginsville Missouri on April 30th at 10:00 am is raising awareness and funds to help the Kansas University Hospital for research of the Prader-Willi Syndrome. Sponsors, volunteers, walkers and donors are needed. All proceeds will go to a PWS Fund at Kansas University Medical Center towards research in hopes of one day finding a cure. The Walk-a-thon is a four-mile walk at Higginsville Confederate Park in Higginsville, MO.
For more information about Prayer Will Support PWS Organization, Walk-a-thon pledge sheets, and Sponsors forms or to make a donation, please contact the Group at P.O Box 79, Corder, MO 64021, send an E-mail to [email protected] or visit their Web site at http://praderwilli.webs.com