The 10th annual Prader-Willi Walk-Along is this Sunday, April 25 at 10:30 am at the Berkeley Marina. Our family will be there bright and early to set-up and help the event run smoothly. We always look forward to this day as a way to connect with other families who have a child with PWS and help raise awareness for a terrific cause.

Oscar continues to amaze us and all who know him with his positive outlook, strong internal drive and general enthusiasm. He is thriving as a 3rd grader at Berkwood Hedge School, where the support and friendship he receives from his teachers, peers and the staff is nothing short of amazing. As a result, Oscar believes in himself and his abilities and just works harder. This year he's written long accounts of vacations and field trips in his writer's notebook, read 200+ page books, constructed a guitar out of a shoe box for the science fair, and persevered happily in math, his most difficult subject. He's excited to go to school every single day. He's still participating in the latin american youth ensemble Los Mapaches (singing, playing bombo and zampona) and insisted on taking an after school clay class and joining a little league baseball team -- requests we happily honored. He's also way more flexible and socially engaged than ever before -- allowing him to play more easily with peers at school and siblings at home, and eagerly try new activities in lots of settings. We're so proud of him!!

When we look back over these past nine years we can easily say that Prader-Willi California Foundation has made a huge difference in our lives. PWCF helped us from the day Oscar was diagnosed -- connecting us with other families, organizing informative conferences with internationally renowned expert PWS speakers, forming support groups where we can regularly meet and share information with other families, helping us understand the complexity of the syndrome, providing crucial medical information, producing a wonderful video for teachers, and helping us advocate for services and school placements!

As you can see, the list of ways in which PWCF has made a difference in Oscar's life is very very long.

While we obviously treasure every success and milestone, we are also extremely aware that Oscar's future holds many challenges. PWS is a complex, life threatening medical disorder that affects the body's hormone system, muscle strength, cognition, learning, behavior and appetite regulating systems. For persons with PWS, the brain does not regulate emotions and appetite normally. Behavior problems are common and worsened by an unrelenting, physiological drive to eat. Undiagnosed, unmanaged and without 24/7 supervision, Prader-Willi syndrome leads to obesity-related illness and premature death. Although research has made great strides to increase our understanding of PWS, there is no treatment to control or even reduce the insatiable appetite, no medication to treat all of the behavior and psychiatric symptoms.

So, although Oscar is relatively bright and full of ideas and aspirations, he will never be able to live safely without constant supervision. With the support of PWCF and it's many member families, we know we will be better prepared to help Oscar and our family face these challenges. Our hopes for Oscar are simple...that he feel successful and happy at every step no matter what his limitations are. Oscar of course sets more specific and ambitious goals -- he plans to go to college and study zoology so that he can become a zookeeper. While I used to downplay his vision so he wouldn't be disappointed I'm starting to learn (finally) that his motivation and hard work have already gotten him places I never expected. And so we encourage him, hoping that we will be able to help him realize his dreams.

Thanks for your support over the years! If you can make a donation or join us for the walk that would be great, but also know that telling one friend about Oscar and PWS will also help spread the word about this difficult and life-threatening disorder, and ultimately help Oscar and all people with PWS!

All the best,

Mary, Paul, Oscar, Abe and Ruby