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Prader-Willi Syndrome is life-long and life threatening. There is no cure. There is no treatment to curb the constant hunger and lack of satiety that people with PWS ALWAYS feel. Food is everywhere and is a constant source of anxiety. Mealtimes can be the most stressful times of the day. Social functions often have to be foregone due to the presence of food and the overwhelming desire of those with PWS to obtain more food in a hopeless quest to stop the hunger if even for only a moment in time. However, the hunger is never stopped and any food binge can be deadly, causing extreme stress for not only the person with PWS but for their loved ones caring for them. The food they crave and desire above most everything else starts to seem like an enemy, but you can't just quit food and you can’t avoid food and live in our society. Other effects of PWS are short stature (if not treated) and decreased metabolism along with low muscle tone. Exercise is difficult for those with PWS as they tire easily and often have delayed motor development and poor balance. This is what life is like when you have Prader-Willi Syndrome. This is just some of what Cheyenne lives with every single day of her life.
Our mission is to Go the Extra Mile and work together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome. Help us to put an end to the hunger!
For more information on PWS, please visit www.pwsausa.org
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!