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***Copy this section and paste into your word processor*** [Date]
[Name] Dear [Name], I am writing in regards to my [age] [son/daughter], [name], who has Prader-Willi syndrome (PWS). I received your name from [my early intervention specialist coordinator’s or someone else’s title], [name]. I would like to talk to you about the possibility of having myself and [our state chapter president, vice president or someone else] of [state group name], [name], present at one of your [manager meetings/all-staff meetings/smaller team meetings] on the topic of PWS. The state chapter is affiliated with the national organization of the Prader-Willi Syndrome Association (USA) (PWSA (USA)). PWS 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. Persons afflicted with this syndrome do not know what it means to feel full after eating because of a dysfunction in the hypothalamus part of the brain. As a result, individuals with PWS most often live a life of padlocked cabinets and refrigerators with their food intake controlled. It is estimated that one child in 12,000-15,000 is born with PWS. That equates to approximately 25,000 people in the U.S. alone. Our local [chapter/affiliate/support group], [name of group], and PWSA (USA) only know of about [number] families in the [name of region] area who have a child with PWS. Nationally, we only know of about 4,700 cases. That means there are at least 20,000 individuals (75%) still at large in the U.S. without a diagnosis, and statistically speaking, that would include individuals in our area. There is great hope for children who have PWS. With the relatively recent approval of growth hormone treatment for PWS (2000) and early intervention and education, infants/children with the syndrome can expect (and are experiencing) an entirely new future from living with the syndrome. This, along with research funding granted through PWSA (USA), provides hope to unlocking the door behind the insatiable hunger, freeing our children from the 24-hour, vigilant supervision and enabling them to someday live independent lives of their own. This much-needed research could also potentially unlock the door to resolving hunger issues for others struggling with obesity as well. It is our hope that by providing your employees with this invaluable information in a cost-free, brief, yet informative presentation, we may be able to help others who have yet to be diagnosed in our community and better serve those who have already received a PWS diagnosis. I will call you shortly to discuss the idea further and to answer any questions you may have. In the meantime, should you have any questions, please do not hesitate to contact me at [phone number(s)]. You may also visit the PWSA (USA) Web site, www.pwsausa.org, to learn more about PWS. Thank you for your consideration and I look forward to speaking with you soon! Sincerely,
[name] ***Copy this section and paste into your word processor*** |