[Title Name of politician] of [City, State or State] Proclaims
May is Prader-Willi Syndrome Awareness Month

(City, State-Date)— [Title Name of Politician] signed a proclamation designating May as Prader-Willi Syndrome Awareness Month. By signing the proclamation, [Title Name of politician] “commend(s) this observance to all our citizens,” and “call(s) upon Government officials, businesses, communities, health care professionals, educators, volunteers, and all the people of the (state/city/town) to continue…strong commitment to advancing awareness of and finding a cure for Prader-Willi syndrome.” PWS Awareness 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 [(city or state) of (city or state)]. 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.

PWSA (USA) is a non-profit organization and the only national membership organization to support those living with and affected by PWS in every stage of life through research, support, education and advocacy. Headquartered in Sarasota, FL, it was formed in 1975 to provide a vehicle of communication for parents, professionals, and other interested citizens. Hospitals, physicians, and parents from all over the world consult with PWSA (USA) with medical emergencies and questions daily.

For more information about PWS or to make a donation, please contact PWSA (USA) toll-free in the US at (800) 926-4797 or (941) 312-0400 or visit their Web site at www.pwsausa.org.

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