News & Upcoming Events
7 Year Old’s Letter to the President Re: Prader Willi Syndrome
I couldn’t have said it better! A few months ago, 7 year old Jayden was faced with a new and daunting assignment is grade 2. He was told that the President’s position allows him to affect change that others cannot. His assignment was to write a letter to the President asking for help with a [...]
Top 5 Reasons You Should Vote Prader Willi Syndrome to the White House
FPWR and PWSAUSA have entered a video into Michelle Obama’s video challenge to fight childhood obesity. You can see our video and VOTE (everyday) at http://communities.challenge.gov/submissions/6800-take-one-small-step We are making quite the splash and moving up to the front quickly. As our mission is to eliminate the challenges of Prader-Willi Syndrome (PWS), it goes without saying that [...]
If Only I Knew …
Over the March break Dante went to camp. It’s a terrific camp that has a ton of different activities for the children. One day Dante’s camp counselor called my wife to tell her that Dante climbed the rock wall! You can see him almost at the top left in the picture. When I saw the picture the [...]
Everybody is Different – How to Tell Your Child About Prader Willi Syndrome
How do I tell my child they have Prader-Willi Syndrome? When do I tell my child they have Prader-Willi Syndrome? What do I say? Once you child is a few years old these can be the trickiest questions on a parent’s mind. If I tell them too early, will they let PWS define them? If [...]
Is Microsoft’s Kinect the Secret Weapon in the War on Obesity?
We all know the rates of obesity are rising. The rates are alarming no matter where you look: Obesity in children rises from 6.5% to 20% in last 30 years Nine US states have obesity rates over 30% An unbelievable, 64% of adults over 20 are considered overweight or obese The situation looks pretty grim. So [...]
Top 5 Mistakes Parents of Children with Prader-Willi Syndrome Make
Although we try our best, we pretty quickly find out that we are not perfect parents. On some days after we have set a clear daily plan, avoided over stimulation and used positive re-enforcement … and your child still has a meltdown, we feel like we would settle for just being an average parent. Well [...]
Happy Denzel Day
In case you didn’t know we recently celebrated Denzel Day (pictured on the left). Denzel Day is not his birthday, but simply a day to celebrate Denzel. Dante (our son with PWS), gets a lot of attention at our Scotiabank One SMALL Step Walkathon (http://onesmallstep.fpwr.org). As parents of a special needs child we also [...]
Live in Montreal? Don’t miss this garage sale for PWS!
June 5th and 12th, you can support PWS research, check out the flyer for more details: Montreal Garage Sale for PWS Flyer
Dr. Haqq Needs the PWS Community!
Dr. Haqq, one of Canadian’s finest Endocrinologists and PWS researchers needs our help. Become part of the solution and take part in one or all of Dr. Haqq’s studies NOW. FPWR Canada funded Dr. Haqq in 2009 and she is already seeing results, she says herself, “We are particularly excited by our preliminary novel findings on [...]
Best Mother’s Day Video EVER!
Thank you to Rhea Utley from Quebec who created this amazing video to acknowledge and thank all mothers with special needs children. It highlights mothers and their children and adults with Prader-Willi Syndrome from all over the world and shows their tremendous effort and determination in raising a child with PWS and helping them to [...]