Prader-Willi Syndrome Organizations to Attend The White House As Winners of The 2012 “Let’s Move” Video Challenge
During 2012, First Lady, Michelle Obama, sponsored a project titled, “Let’s Move.” This project included a contest and organizations had the opportunity to submit a video that encouraged healthy lifestyles and a fight against obesity. The winning organization would receive an invitation to the White House. Prader-Willi Syndrome Association (PWSA USA) put on a “full court press” and assisted Foundation for Prader-Willi Research (FPWR) in winning the contest with over 6,000 votes and on March 6th, 2013 representatives from PWSA (USA) and FPWR will indeed visit the White House!
Theresa Strong, Research Director, FPWR and Keegan Johnson, Executive Director will be attending the official Let’s Move event and meeting with Washington officials to discuss how the PWS community can lead the fight against obesity.
We would like to celebrate this victory with EVERYONE on March 6th! Local families are encouraged to meet us on Capitol Hill Wednesday afternoon to visit the office of their representative and discuss how PWS can help in the fight against obesity.
What is Prader-Willi Syndrome?
Prader-Willi syndrome is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.
It is estimated that one in 12,000 to 15,000 people is born with PWS. Although considered a “rare” disorder, PWS is one of the most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified. PWS is found in people of both sexes and all races.
What is the Prader-Willi Syndrome Association?
Prader-Willi Syndrome Association (USA) is an organization of families and professionals working 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. PWSA (USA) is the largest support, research, and advocacy organization for people and families living with PWS in the United States.
How can people help or get involved?
PWSA (USA) has ongoing campaigns throughout the year to raise funds and awareness. The easiest way is to go to www.firstgiving.com/pwsausa and donate towards our “On The Move” campaign to help us reach our goal to continue to provide crisis and medical support, education, advocacy and awareness and research towards a cure for Prader-Willi syndrome.
For more information about Prader-Willi syndrome or how to become more involved, please call 1-800-926-4797.