Welcome to my One Small Step page to raise money for Laila & the Foundation for Prader-Willi Research!
My niece, Laila Kahn, was diagnosed with Prader-Willi Syndrome (PWS) at birth and is now a beautiful 4 and a half year old princess. She has a wonderful support network of family, friends, teachers and specialists who help her navigate the challenges and live her life to the fullest.
In honour of Laila, I will be participating in the Bintan Ironnman 70.3 on the 25th of August 2019 and raising funds for the critical research desperately needed to find a cure for PWS
For those of you who haven't heard of PWS, it's a rare, complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior. It affects males and females with equal frequency and all races and ethnicities.
Unfortunately, there is currently no cure for PWS and for many individuals affected by the disorder, the elimination of some of the most difficult aspects of the syndrome, such as the insatiable appetite and obesity, would represent a significant improvement in quality of life and the ability to live independently.
Every dollar donated will go directly towards advancing PWS research through the Foundation for Prader-Willi Research. You can learn more about PWS and the great work that FPWR is doing at http://www.fpwr.org/.
I would be so grateful for your support!!!