On April 1, 2014 my family learned that Kennedy McVey, my great-niece, was diagnosed with Prader-Willi Syndrome. This little girl has had many challenges in her first 5 years of life, which include delayed speech and language, poor muscle tone, intellectual disability, vision problems, behavioural issues, and sleep disorders. Her greatest challenge will come as a result of hyperphagia—a constant sense of hunger.
Kennedy will want to eat constantly, but will never feel full. The Foundation for Prader-Willi Research is an organization devoted to eliminating “the challenges of Prader-Willi Syndrome, through the advancement of research”. The International One SMALL Step Walkathon is one way that everyone around the globe can work together to achieve this mission.
On September 14, 2014, more than 250 family members and friends got together in Ottawa to “walk” for Kennedy! Her One SMALL Step Walkathon was a resounding success at raising awareness and funds for the Foundation for Prader-Willi Research. The day was chilly, but the love and support shared by all who attended, warmed our hearts. It was an amazing day!
Online donations for “Team Kennedy” have reached over $18,000, with an additional $7,000 donated on the day of the walkathon through raffle prizes, a silent auction and 50/50 draw. We are extremely grateful to all who have given to this very worthwhile cause. I urge you to click on the link below to watch Kennedy’s story, and please consider donating to the Foundation for Prader-Willi Research.
Thank you so much!