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Parents Strive to Stop Endless Hunger for Children with Rare Disorder
CALGARY, Alberta (September 2, 2015) – A small and dedicated group of local parents are leading the charge to fund research into a rare genetic disorder called Prader Willi Syndrome. On Sunday, September 13, they’re hosting Calgary’s sixth annual One SMALL Step walkathon in Edworthy Park from 10:00 am to 12:30 pm with the goal of raising $50,000 for the Foundation for Prader Willi Research.
Prader Willi Syndrome (PWS) is a rare genetic disorder occurring in approximately one in 15,000 births. It results in a feeling of constant hunger because the brain doesn’t get a signal that the belly is full. Other symptoms include difficulty regulating emotions, temperature and pain; issues with puberty and fertility; and low muscle tone which often leads to low stamina, poor motor skills, and scoliosis (curvature of the spine).
“It’s a complex disorder that greatly impacts our entire family,” says Stephanie Thomas, host of this year’s walk and parent of a 12-year-old girl with PWS. “Our daughter has behavioural issues that can be severe, and our plans are usually based around her needs.”
“And she can’t be expected to control her drive for food so in our house all food sources – including the fridge, pantry, and even the garbage – are locked at all times,” Thomas explains.
A family event open to all, One SMALL Step includes an easy, two kilometre walk on a paved path, prize draws, face-painting and children’s entertainment. To register, visit www.onesmallstep.fpwr.org.
Since its inception in 2005, the One SMALL Step walkathon has grown from a single event in Mississauga, to 72 walks throughout North America and Europe (20 in Canada). Last year, One SMALL Step events around the world raised a total of $1.6M, and 100% of proceeds fund cutting-edge PWS research.
The Foundation for Prader Willi Research (FPWR) Canada was established in 2006. Their mission is to eliminate the challenges of Prader Willi Syndrome through the advancement of research. High quality research will lead to more effective treatments and an eventual cure for this disorder, allowing those with PWS to live full and independent lives. For more information, visit www.fpwr.ca.
CONTACT:
Stephanie Thomas, Walk Host & Media Relations
403-701-3701
thatsallshewrote@shaw.ca
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