MEETING BULLET POINTS

(Tailor the script to fit your needs) 

• My son/daughter, ______________, is a student attending ____________ Elementary School, and has Prader-Willi syndrome (PWS).
• Assembly Idea: I would like to talk to you about the possibility of holding a school assembly on the very important topics of health, nutrition, exercise, body image, eating disorders, self-acceptance and acceptance of others, all topics that surround PWS.  In addition, if they are interested, I would like to solicit the help of our school nurse, Mr./Mrs.___________, as well as our PE teacher, Mr./Mrs.___________, utilizing their expertise to accomplish this goal.   
• Presentation: I would like to talk to you about the possibility of giving an informative, yet brief presentation on PWS to your teachers/nurses/staff members. 

Because my child has PWS, I have a vested interest and am very concerned about his/her health, especially when it comes to the assembly topics I just discussed.  Allow me tell you a little about PWS: 

• It 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 their 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 support group, [insert name if you have one], and the national PWSA (USA) organization only know of about [enter # if known] families in our 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.  Statistically speaking, it is likely that there are undiagnosed children in our community with PWS. 
• There is great optimism for children who have PWS.  With relatively recent FDA approval of growth hormone for the treatment of PWS in 2000, and with early intervention and education, infants and children with the syndrome have more hope than ever before.  Additionally, PWSA (USA) funds, among other projects, critical research in an effort to unlock the door to understanding hunger. This kind of knowledge would free our children from 24-hour, vigilant supervision and could enable them to someday live independent lives of their own.  This much-needed research could also help others struggling with obesity as well. 

• Assembly:  It is my hope that by providing our students with the opportunity to openly discuss these important topics, along with this invaluable information on PWS, we may be able to help them feel more comfortable and accepting of themselves and others.

• Presentation: It is my hope that by providing your teachers/nurses/staff members with this invaluable information, we may be able to help others who have yet to be diagnosed in our community, and possibly our school.  In addition, I will feel at ease knowing my own child may feel better understood and accepted for his challenges with PWS.