Sunday, April 22, 2012

FPWR Conference

I was originally planning to go to the FPWR conference in Toronto this past weekend, but for various reasons, I wasn't able to go. However, I was thankful that FPWR included live streaming of many of the presentations, which was AWESOME. If you are interested, here's the link to the presentations: http://www.ustream.tv/recorded/22016907. I myself saw Dr. Miller's presentation, which was excellent, and plan to watch the presentation by Dr. Tauber on the oxytocin treatments that are upcoming for PWS. Also, here's another reminder to vote HERE today for the FPWR video on the Challenge.gov website. You can vote once a day! Included is a letter from one PWS mom, Gretchen, to Michelle Obama, about why PWS deserves national attention. Dear Mrs. Obama, Your Let's Move initiative gives me hope. My son has Prader-Willi Syndrome, the number one genetic cause of obesity related death. To help him maintain an average Body Mass Index requires vigiliant monitoring of calories and constant effort to keep him moving. While my son's life depends on it, I am here to encourage other parents, that it is possible to provide a lifestyle for their children with nutritionally packed food and lots of fun exercise. Our children are born with a world of opportunity. It is possible to create a healthy enviroment that can fuel them to reach their full potential. If parents with a child with PWS can do it every minute of every day then any parent can. It gives me hope that one day my son will live in a healthier world making his struggles a little easier and that all our children live good, happy, and healthy lives. Thank for the importance you place on our children's futures. Sincerely, Gretchen Gxxxx

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