Another year has passed and we are back at it! Why? Because our son, and everyone with Prader-Willi syndrome, deserves to LIVE LIFE FULL! They need effective treatments for the many challenges they face. Hyperphagia is the hallmark of this syndrome. It means that a person with PWS thinks about food at all times, attempts to gain acess to food at all times, worries about what they will eat and when they will eat at ALL TIMES. This is not only disruptive to daily life, it is also dangerous because a person with PWS will stop at nothing to eat food, and when they start they will not stop. We live a life of complete restrictions. All food activities are programmed and scheduled. Food is portioned out, no extras are given. All in an effort to keep Evan safe. This also means restrictions on socialization because he can not visit freely with others for fear that he will access food when not directly supervised.
If this sounds serious...it is. Evan is now a teenager. With that comes changes in expected freedoms and attitudes. But, not for a person with PWS. Structure and routine are key elements to safety. Yet we know that could all change and we have HOPE that one day he will live a life like his brothers and his peers; one where he can have independence and the freedom to make choices. Every donation brings us closer to this goal. Every dollar donated is carefully curated by the Foundation for Prader-Willi Research to supply talented researchers all over the world with grant money to make breakthroughs in PWS research. It is because of each of you who are donating today and have donated in the past that we BELIEVE that one day Evan's life will be changed for the better. Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research. You can learn more about PWS and the research that is underway at http://www.fpwr.org.
Thank you for being invested in Evan and others like him. As parents we are humbled at your generosity and support. We are so very grateful to each of you!
Lisa and Michael