To tune in type the following link into your web browser http://www.ustream.tv/channel/fpwrcanadatest

… subject to us getting good internet reception from the park

“Suddenly we were part of a community of parents who had a ‘do what you can and do it now’ attitue” – Matt Hawkins

Matt and his wife Megan have also raised over $10,000 for the One SMALL Step Walkathon on August 16th http://onesmallstep.fpwr.ca

“Matt Hawinks and his wife Megan O’Neail, were living in the heart of midtown Toronto with their kids Dexter and Georgia, when on Valentine’s day 2008, their third child was born.  But when little Chloe had feeding problems, Megan knew something was wrong.  A battery of tests led to a diagnosis that the Hawkins had never hear of.  Their daughter had Prader-Willi Syndrome (PWS), a rare disorder characterized by low muscle tone, cognitive delay and most cruelly an insatiable appetite.” – Today’s Parent September 2010 Edition

Pick up the September issue of Today’s Parent

Genevieve Currie and Dr. Haqq were also interviewed by CTV and you can read the article and see the video on the CTV website here

There is still time for you to register or donate online at onesmallstep.fpwr.ca

Gladys Irene Thomas was a proud great-grandmother to Greta Thomas-Sprake. In her memory the Thomas family will be accepting donations in Greta’s honour to raise money for Prader-Willi Syndrome research. To make a donation in memory of Gladys Irene Thomas, click here.

FPWR Canada does it again.  On Friday, May 14, we welcomed over 500 people to the Terrace Banquet Centre for our 4^th annual Gala.  It was an incredible night with Prader-Willi Syndrome families from across Canada and friends and families coming together to raise money to eliminate the challenges of Prader-Willi Syndrome.  The night featured a silent and live auction, raffle prizes which consisted of a sports package and a trip for two to Las Vegas and live entertainment.  At the end of the evening we not only had an amazing time, but we also raised $58,000 for Prader-Willi Syndrome research.  Join us for our 5^th Annual FPWR Canada Gala on April 15th 2011. 

Amy and Toen Starkweather and their family were featured on Extreme Makeover Home Edition.  The show was extremely well done.  It was accurate, touching and really told the story of families and children living with Prader Willi Syndrome.   For the last couple of months the Prader-Willi Syndrome community has really been coming together online with new facebook groups and families with Prader-Willi Syndrome becoming friends.

Tonight the visibility and awareness raised by the show has really put Prader-Willi Syndrome on the map.  Looking at the google trends right now you can see that Prader-Willi Syndrome is the # 1 search term!

If you didn’t believe it was possible to make a difference, now you should.  To top it off, the Prader-Willi Syndrome community is just getting going.  The researchers in the PWS community have been hard at work as well.  Last year www.fpwr.org brought together 50 of the top scientists in the world to pull together a plan to find more treatments and eventually a cure for PWS.  The research plan is now in place and soon to be published.  With the research plan and the momentum on the community coming together, things are now getting interesting.  We’re just getting started.  If you’d like to help let us know.

keegan.johnson@fpwr.ca

Dealing with a new diagnosis can be overwhelming and it takes some time for families to adjust.  As far as we can tell the Howards skipped that step.  Living just outside of Montreal, Quebec, Canada the Howards chose to deal with their diagnosis, by joining the One SMALL Step Walkathon and raising money … 5 weeks later their friends and family had contributed over $5,000 and the thermometer keeps rising.

“Stacey and Eric are an inspiration for all of us,” said Tanya Johnson, co-founder of FPWR Canada.  ” They have taken what could have been devastating news and turned into into something positive.  The money they are raising for research will be used to help eliminate the challenges of Prader-Willi Syndrome.”

“Your conference may have saved lives today,”

You will not want to miss these 2 days of learning and sharing of Prader-Willi Syndrome best practices.  For only $75 you can attend our 2 day National Conference on May 15th and 16th.  You will hear from Prader-Willi Syndrome researchers including Dr. Haqq, Dr. Eric Storch.  Learn about food and healthy eating from TV personality and health and wellness expert, Rose Reisman.  In addition your child will be able to participate in music, snoezelen and physio therapies.  Take a look at the agenda and if you have any questions, feel free to email our conference chair, Pat Crne at pat.crne@fpwr.ca

For more information and to buy tickets please visit http://www.fpwr.ca/news-events/events/national-research-conference/ … time to register is running out.

Therapy Day @ Bloorview Kids Rehab:  Saturday May 15, 2010, 10:00 to 4:00, Registration Opens at 9:00

Conference Day (for families and medical professionals) @ Ontario Science Centre:  Sunday May 16, 2010 10:00 to 4:00, Registration Opens at 9:00

Gala for Prader Willi Syndrome, Vaughan, Ontario

Tickets are selling fast!  Buy your tickets on-line http://www.fpwr.ca/news-events/events/one-small-step-gala/ (or call Michelle Cordeiro, 1-866-99-FPWRC x252)  today!  FPWR Canada is hosting our  fourth annual One Small Step Gala on Friday, May 14 at Terrace Banquet Centre in Vaughan, Ontario.  Enjoy a delicious meal, open delux, live DJ and silent/live auction for only $110.  Buy a ticket for yourself or sell a table and bring your family and friends for a night out to support Prader-Willi Syndrome Research.  Celebrate with over 700 people and support a great cause!