I am running a 1/2 marathon in Siem Reap in December and using this opportunity to raise awareness for Prader-Willi Syndrome and funding for the Prader-Willi Research Foundation.
PWS is a rare, non-inherited genetic disorder affecting approximately 1 in 15,000 people - males and females with equal frequency and all races and ethnicities. Many systems in the body are affected by a PWS diagnosis but the hallmark symptom is extreme hunger - a person with PWS never feels full. The relentless hunger coupled with a low metabolism (about half that of their typical peers) makes diet and daily exercise a routine and essential requirement of their lives. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.
My niece Laila was diagnosed with PWS in March 2015 at only 8 weeks old. She is a beautiful girl, full of life, who brings so much joy to the people around her. Laila continues to face challenges but her family has taken a positive, proactive approach and she has access to an amazing network of care givers as well as growth hormone therapy.
Currently, there is no cure for Prader-Willi syndrome. 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.
The Foundation for Prader-Willi Research is working to eliminate the challenges of Prader-Willi syndrome through the advancement of research. They support cutting edge studies around the world to further the understanding of PWS and collaborate with research institutions, pharmaceutical companies and the FDA to develop new treatments that will help these children.
I would really appreciate your help in supporting such a worthy cause and one that affects my family so closely. No matter how big or how small, every effort helps us come closer to the day that our loved ones will lead independent lives, free of the burden of Prader-Willi syndrome.
Once my fundraiser has closed, your generous donations will be collectively made to FPWR in Laila’s honor.