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Informative Points About Prader-Willi Syndrome

• Prader-Willi syndrome is a rare genetic disorder that occurs in both genders and all races. It is the most common known genetic cause of life-threatening obesity, affecting appetite, growth, metabolism & behavior. 

• Prader-Willi syndrome is a life-long condition and currently there is no cure. 

• Research on Prader-Willi syndrome is the window of opportunity to finding the cure for ALL obesity.

• Anyone can make a difference by becoming a financial supporter or volunteer for Prader-Willi Syndrome Association (USA).  Support is critical to fund research and generate awareness so families can receive a diagnosis and education early in their child’s life and quite possibly, save their child’s life.

• PWS is a non-inherited genetic disorder of chromosome 15 which causes children to have a constant sense of hunger, slower metabolic rates, learning disabilities, speech issues, weak muscle tone, and much more that we are just beginning to understand.

• PWS occurs in approximately 1 out of every 12,000-15,000 births and equally affects both males and females and all ethnic backgrounds. That equates to approximately 25,000 people in the U.S. alone. In our area, that equates to [number], but PWSA (USA) only knows of about [number] of families in [name of area] who have a child with PWS. Nationally, PWSA (USA) only knows of about 4,700 cases. That means there may be at least 20,000 individuals (75%) still at large in the U.S. without a diagnosis.  

• PWS symptoms are caused by a dysfunction of the hypothalamus in the brain which regulates hunger and many other systems in the body. Individuals who have PWS feel hungry most (if not all) of the time and yet can only eat about half the calories of an average person. Individuals with PWS most often live a life of padlocked cabinets and refrigerators with their food intake externally controlled as they cannot curb their hunger.

• PWS is a life-threatening medical condition. It is not psychologically based.

• Together, we can work to make this the first generation of children with PWS who do not have to spend their lifetimes suffering from constant hunger. 

• There is hope for children who have PWS.  With the relatively recent FDA approval of growth hormone treatment for PWS (2000) and early intervention and education, infants and children with the syndrome are experiencing a better future. 

• An early diagnosis saves lives. 

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