PWS & Childhood Obesity:
How YOU are directly impacting childhood obesity by supporting this cause
Currently, there are over 7,000 individuals diagnosed with Prader-Willi Syndrome in the United States, however, approximately 65% of cases remain undiagnosed or misdiagnosed. As of 2010, Colorado recognized 124 individuals living with PWS. This number continues to increase.
Nationally, the percent of children ages 2–19 years who are overweight or obese has more than doubled from 15.4% in 1971–1974 to 31.8% in 2011–2012, and the percent of children who are obese more than tripled from 5.2% in 1971–1974 to 16.9% in 2011–2012.
The Colorado Department of Public Health has stated, “Obesity is a complex, serious and costly public health problem that’s on the rise everywhere in the United States, and Colorado is no exception. Obesity-related conditions include heart disease, stroke, type 2 diabetes and certain types of cancer, some of the leading causes of preventable death.” Tackling obesity is one of Colorado's 10 Winnable Battles and is an initiative within the Governor’s 2013 State of Health Report.
Research by Robert Wood Johnson Foundation, published in 2014, reveals that Colorado has an obesity rate of 10% among children ages 2-4 and 10.9% among 10-17 year olds.
In 2014 alone, the Foundation for Prader-Willi Research supported 20 cutting edge projects and initiatives; awarded over $1.2 million to accelerate high-impact PWS research and funded projects were published in 23 scientific publications. Since FPWR’s inception, more than 100 research projects have been funded totally more than $5 million in seed funding to leading institutions around the United States and abroad. Dozens of researchers have successfully leveraged FPWR's financial support and advocacy to apply for and receive funding from national sources like the National Institutes of Health. In the last decade, grants in excess of $6 million have been committed to PWS research through successful collaborations between FPWR, academic institutions, children's hospitals and Pharma.
Scientists, Medical Professionals, and Pharmaceutical companies believe that researching the cause and potential treatments for individuals with PWS may provide a model for all individuals struggling with obesity.
"According to Dan Driscoll, a board-certified specialist in clinical genetics, pediatrics and clinical cytogenetics at the University of Florida College of Medicine, at least six clinical trials are aimed at targeting appetite control and behavior. Prader-Willi Syndrome offers researchers and pharmaceutical companies an extremely 'pure' genetic population on which to test the benefits of new drugs. 'This syndrome is so well defined and comes with a very clear, definitive genetic test to confirm its existence, that it makes a great model for testing obesity drugs,' the geneticist said, adding, 'I am absolutely convinced that in at least one of these trials, there will be applicability to obesity in the general population.'" --"Sarasota nonprofit is on a national mission to combat obesity", HT Health, September 15, 2015
"Once an obscure and neglected disease, Prader-Willi is starting to attract more attention from scientists and pharmaceutical companies for a simple reason: It may shed light on the much broader public health problems of overeating and obesity. 'These are remarkable human models of severe obesity,' said Dr. Steven B. Heymsfield, a professor and former executive director of the Pennington Biomedical Research Center in Baton Rouge, LA. 'When we discover the underlying mechanism of these very rare disorders, they will shed light on garden-variety obesity." -- "Seeking Clues to Obesity in Rare Hunger Disorder", The New York Times, January 14, 2014
"In the 1980's, there was a study observing the effects of early-onset obesity on cognition in individuals with Prader-Willi Syndrome. Driscoll and Miller began a clinical research study to investigate whether early-onset obesity had a negative impact on children's brain development and ability to learn. They found that children with early-onset obesity, regardless of the cause of the obesity, had lower cognitive function than their non-affected siblings and some showed premature symptoms of Alzheimer's disease in their late teen years on their brain MRI. 'Obesity and Prader-Willi syndrome affect all aspects of patients' lives,' Miller said. 'When they're constantly starving, they naturally can't focus on anything else. So it impacts their socioeconomic statuses and limits their ability to function normally in their communities.'" --"The pursuit of a cure for the hungriest," UF College of Medicine News Resource, July 17, 2012
"'Children with Prader-Willi syndrome face many difficult challenges,' said Dwayne Spradlin, CEO and president of InnoCentive. 'Finding a solution to the problem of hyperphagia will not only bring them closer to a lifetime of independence, it may advance the research that is being done worldwide to understand and combat childhood obesity.'" --"InnoCentive and the Foundation for Prader-Willi Research Collaborate to Advance Research in Childhood Obesity", December 20, 2011
"PWS research may also contribute to basic medical research by providing new insights into the metabolism of obese patients, whose obesity is caused by factors other than PWS. In this way, PWS may be used as a model for obesity." --"Prader-Willi Syndrome as a Model for Obesity", International Symposium, Zurich, October 2002