Sarasota, FL (PRWEB) February 7, 2009
Sarasota, FL -- The Prader-Willi Syndrome Association (USA) received more than two hundred thousand dollars from Eastside High School in Taylors, South Carolina as a part of the school's Spirit Week fundraising competition. The donation, celebrated at a school pep rally, will support the organization's crisis and family support services for those affected by the condition.
The check is the largest single amount donated to the nonprofit. With help from Linda Johnson, a mother whose daughter, Hannah, age two, has Prader-Willi syndrome (PWS), PWSA (USA) was chosen to receive the proceeds from Eastside High School's week long fund raising efforts guided by Central Spirit President Selvy Miros and Student Body President Katie Henson. .
Hannah, whose sweet disposition captured the hearts of the Spirit Week Committee, was diagnosed with the condition when she was three months old, and it was her story that inspired the Eastside community to pledge their support for the Prader-Willi Syndrome Association (USA).
"We interviewed 18 charities. Hannah Johnson's family came to us with an urgent plea to help children with Prader-Willi syndrome. The whole student body fell in love with Hannah and wanted to help her and others like her. PWSA (USA) was chosen as Eastside's Spirit Week charity because we wanted to raise awareness in the community about a little known disease and provide funding that could help. Eastside's motto for the 2008 Spirit Week was 'Believe', said Henson on Facebook.com. We believed that we could make a difference for those who suffer like Hannah,"
For thirty years Eastside High School students have been dedicated to changing the world. They've been competing with rival Wade Hampton High School in Spirit Week since 1978 to raise money for charity and successfully raised more than $100,000 for the Cystinosis Research Network last year. "Spirit week is a giant learning experience for the whole school with team building and problem solving and teaching philanthropy," said student government adviser Jackie Weaver. "Kids have to learn to support their communities. It's fun and crazy but they're also learning to give generously." Students hosted all kinds of events such as concerts, skate nights, themed school days and a whole lot more to raise money.
"We are overwhelmed with gratitude for the tremendous work of the students of Eastside High School. It is with utmost appreciation that we accept their donation to improve the lives of those with PWS. It is a remarkable gift and we are awed by Spirit Week and how much these students put into raising funds for charity," said Craig Polhemus, executive director of PWSA (USA).
Parents of children with PWS have also been greatly moved by the donation. "Thank you and everyone at Eastside High School. You all did such an amazing job. As a parent of a young child facing a life of uncertainty with PWS, you as a collective whole give me hope for his future. said Jeannette Downs Young. Thank you from the bottom of my heart."
PWS is a complex syndrome affecting appetite, growth, metabolism, cognitive function and behavior and affects one in 12,000 to 15,000 births, including both males and females and all ethnic groups. Because of an abnormality in the hypothalamus area of the brain, individuals who have PWS never receive the message of satiety; they are always hungry. They may experience rapid and excessive weight gain due to a metabolic dysfunction. Without environmental supports and dietary restrictions, these individuals will most likely succumb to PWS. Currently there is no cure and, to date, no medications or procedures are successful in staving off the relentless hunger. However, growth hormone has been effective in increasing height, improving body mass and metabolism, and boosting strength and energy. With early intervention and proper management, most individuals who have PWS can maintain healthy weights and have a normal life expectancy.
PWSA (USA), a 501(c)(3) charity, that helps children and adults with PWS and their families through every stage of life. It was formed in 1975 to serve parents, professionals, and other interested citizens. Hospitals, physicians, and parents from all over the world consult with PWSA (USA) with medical emergencies and questions daily. A 24-hour medical emergency hotline is offered at 800-926-4797 to advise and assist families and medical and other professionals.
For more information about PWS or to make a tax-deductible donation, please contact PWSA (USA) toll-free at (800) 926-4797 or (941) 312-0400 or visit their Web site at http://www.pwsausa.org.