Thank you friends for taking the time to visit our web page and to read about my nephew, Nicholas Joncas. I guarantee that this is the only fundraising request you will receive from me this year as there is no other cause I feel as strongly about or am as connected to as Prader-Willi Syndrome Research. Prader-Willi Syndrome (PWS) is a life threatening medical disorder affecting: hormones, muscle strength, appetite, behavior, cognition and learning, temperature regulation, pain tolerance, and sleep patterns. Behavior problems are common and worsened by an unrelenting, overriding physiological drive to eat. For someone with PWS, the feeling of fullness after eating is missing and quite simply, people with PWS feel as though they are starving all of the time.
When my nephew Nicholas was diagnosed with PWS, it was nothing short of devastating for our entire family. We have been coping with the knowledge that this beautiful, joyful little boy will suffer and struggle with basic things we take so for granted unless we do everything we can to find ways to help him and others with PWS.
We have good reason to be hopeful. New research has identified aspects of Prader-Willi Syndrome that were not understood until now and has opened new investigations into therapies and potential drug interventions that could drastically reduce or even end the struggles with hunger that Nicholas and children like him would otherwise face for the rest of their lives.
I am writing to ask you for some help. Our family is helping my sister Colette and her husband Eric to organize the first Minnesota walk to raise money for Prader-Willi research. I can’t even begin to tell you how much we would appreciate a donation to help us reach our goal of $30,000 and I can assure you that 100% of every dollar donated goes directly to funding for new studies. Any amount is welcome and appreciated and as a thank you for your donation, we will enter your name into a drawing one time for every $20 you donate and you will be eligible to win prizes that have been donated by businesses in our community.
We would be honored to have you join us for the walk as well. It is our hope that by doing the walk, we can educate our community about PWS, especially for children who go undiagnosed because of a lack of awareness about testing for the syndrome. The walk will take place on June 2nd at 1:00 pm at Johnny Cake Ridge Park East in Apple Valley and will be hosted by Aristea Brady from WCCO News. You can find more information about the walk, learn more about Prader-Willi Syndrome, or make a direct donation right here on the website. Of course, you can always send your donation to me in the form of a check made out to: FPWR (Foundation for Prader-Willi Syndrome Research). My address is 10337 Colorado Road Bloomington, MN 55438.
Please join us to walk and help us with a donation if you can. Your support will have a huge impact for Nicholas and our family and for all people with PWS and their families as well.
Thank you so much for taking time to read and consider this letter. Please don’t hesitate to call me if you have any questions.