Our 3 year old daughter Madelynn was born with the genetic disorder Prader-Willi Syndrome (PWS) and we are helping to raise money for the Foundation for Prader-Willi Research Canada (FPWR Canada) by hosting this walk in Fredericton. All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Learn more about PWS and this event at http://www.fpwr.ca/.
Imagine waking up every day and feeling hungry all day, ALL OF THE TIME, imagine not having enough strength to stand, coping with OCD, having sleep disturbances, having injections daily just to grow normally. These are SOME of the issues a child or adult deal with who have PWS. Now, imagine being a parent watching helplessly as your child contends with this rare disorder. Waiting for the characteristics of the disorder to manifest themselves in your otherwise perfect child.
Please help us spread awareness, reduce the daily challenges and possibly find a cure for our sweet little girl and the many others with this condition. Help us do something that will make a difference.
If plan to join us for the walk, rather than send a us donation you can create your own donation page to send out to your network of contacts. Go to the link below to register a page: