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[Date]

Name

Title (i.e., Mayor, Governor, Representative)

Address

City, State Zip

 Dear [Name],

            We are asking you to join us in our efforts to generate awareness of Prader-Willi syndrome, a rare disorder but the most common known genetic cause of obesity.  We are requesting a proclamation from you to declare May as Prader-Willi Syndrome Awareness Month. This week has helped bring awareness about this complex syndrome and has helped to save lives!

PWS Awareness Month was established by Prader-Willi Syndrome Association (USA), a non-profit organization and the only national organization to support those living with and affected by PWS through every stage of life, to focus the spotlight on this genetic disorder. “Awareness and early education can prevent obesity-related deaths and years of isolation and emotional trauma to the family and child. Awareness can also save thousands of dollars a year in medical costs for each child,” said Janalee Heinemann, executive director of PWSA (USA).

>Individuals who have PWS have a constant 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. Those with PWS need to live a life of padlocked refrigerators and pantries to protect them from consuming life-threatening amounts of food and need 24 hour supervision to keep them from food. Additionally, those with PWS often need to consume only half of the normal 2,000 calorie daily diet to maintain normal weight due to a dysfunction in the metabolic system. There are many other aspects to this syndrome, some of which we are still learning (for more information about PWS, visit www.pwsausa.org or call 800-926-4797).

It is estimated that approximately 75% of those who have PWS in the United States are still unknown to Prader-Willi Syndrome Association (USA). Some of these 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. 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 could unlock the door to understanding obesity in the general population, those who are overweight but who are otherwise healthy. With obesity reaching epidemic proportions, this kind of knowledge could help millions.

            By signing a proclamation for [town/city/state], you are supporting this life-saving effort and also someone I love very much who has PWS, (name of person, age, and relationship to you)! If you have any questions please feel free to contact me at [phone number]. Thank you.

 

 Sincerely,

(your name)

(contact information)

Encl.

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