Thanks for visiting our new website www.fpwr.ca.  Our new site will allow us to bring you the latest PWS research information, raise money and help connect families across Canada.  Take a look and see if you can find your picture on the site.  If you would like us to add your picture and inspirational story on the site, let us know at tanya.johnson@fpwr.ca

• Highlights video and summary of all speakers (Theresa Strong, Jennifer Miller, Rachel Wevrick, Dr. Berall and Keegan Johnson)…Find out how our medical professionals team up to change medical protocol for individuals with PWS. The outcome of critical PWS research may have saved your child’s life! Ask your endocrinologist about adrenal insufficiency testing
• Pictures of families/doctors/researchers/ individuals with PWS who attended our weekend of hope
• Inspirational phrases/posters of our precious loved ones with PWS (contact Tanya Johnson (tanya.johnson@fpwr.ca) to find out how you can get a poster of your own child free of charge)
• You can also check out our videos on our website www.fpwr.ca/kloe/kloe.asp and on YouTube http://www.youtube.com/user/fpwrcanada

FPWR Canada has full coverage of all speakers available on DVD, to receive a copy of this valuable information (along with our GH FAQ package), please email Susan James at susan.james@fpwr.ca. If you have a child with PWS and you are one of the first 100 families to send us your complete contact information, you will receive these resources for FREE! If you are a medical professional or individual who is interested in learning more about PWS research, you can purchase a DVD for only $15

Save the date: 2nd Annual FPWR Canada’s National Medical Research Conference May 15-16th, 2010 at the Ontario Science Centre in Toronto.

“Your conference may have saved lives today,” says Karen Balko, dietician at NYGH.

The gala, held at the luxurious Terrace Banquet Centre in Vaughan, was both an emotional and entertaining evening. Highlights of the evening included:

Touching videos of people with PWS,

• Inspirational words from Alice Viroslav regarding her daughter’s challenges with PWS and successes in life,
• An overview by Dr. Theresa Strong of the future possibilities of PWS reseach,
• Cocktails, door prizes, Terrace’s exquisite dining, deluxe bar, live and silent auction, dancing,
• A raffle draw including a 42 inch LCD HD TV with DVD and Wii console, autographed hall of famer hockey stick, Blue Jay tickets, golf family pass for four (18 holes + cart), Toronto FC tickets, and most importantly;
• A $100,000 cheque presentation to FPWR to fund 2 additional PWS research projects.

One BIG Thank You – This event wouldn’t have been possible without the support of our guests and all of our generous corporate sponsors. Thank you for bringing your energy and enthusiasm to our event.

Our Gala committee and volunteers put together another top class event. They kindly donated their valuable time and expertise to take care of all the event details, which resulted in:

• Over $8,000 being raised through our raffle draws, and;
• Over $30,000 being raised through our silent and live auctions with items such as a TFC autographed soccer ball, private cooking lessons, framed limited edition art, jewelry, gift certificates and much more!.

On behalf of The Foundation for Prader-Willi Research Canada (FPWR Canada) and the One Small Step Gala Committee we thank you for being a part of our Third Annual One Small Step Gala and making it so successful.

We hope you save the date and join us again at Terrace Banquet Centre next year on Friday, May 14th, 2010 and celebrate our on-going commitment to Prader-Willi Research.

With the help of our new online fundraising tool, you can now register as a team or as an individual and create your own personal page.  Download a picture, write your own personal story and email your friends and family to collect pledges on line (click here to view example of Dante’s page: http://fpwrca.convio.net/site/TR/Events/General?px=1002241&pg=personal&fr_id=1040&et=66diI04DxkIkK78OrsHE_A..&s_tafId=1070 ). It’s fun and easy, so set your goals high and watch your thermometer rise! Register (click on register button to access convio page: http://fpwrca.convio.net/site/TR/Events/General?fr_id=1040&pg=entry ) today.

Ontario Event Prizes (Participant must be at Centennial Park in Etobicoke on Aug 16th)

• NEW!  Register as a team of 4 people and for every $2500 you raise collectively, your team will qualify to win our KPMG Grand Prize (add logo here with link to their website) VIP box to watch one Raptors or Leafs game at the ACC for 10 people (valued at $7500)
• For every $500 raised you can also qualify for our Air Canada Vacations Grand Prize (add logo here with link to their website) an all-inclusive trip for 2 to Punta Cana (valued at $4500)

Online Prizes (To qualify, anyone who raises money for FPWR Canada and who does not attend the event in Etobicoke must collect donations and submit by Aug 16th, draw will take place on Aug 17th)

• For a minimum of $100 raised you receive an FPWR Canada T-shirt
• For every $500 raised, you will qualify to win our electronic package (details coming soon)

We need your help to reach our goal of raising $100,000 for Prader-Willi research.

As a non-profit organization we have worked with a number of charitable organizations, like the OPWSA and PCWF, to achieve our mission of "eliminating the challenges of Prader-Willi Syndrome through the advancement of research". The next step in our evolution is to become our own charitable organization and we are expecting to receive our charitable license in 2009. One of the charities we have worked with in the past, PCWF, has stopped operating as a charity and is now a non-profit organization. With our own application in the works we will no longer be working with PCWF going forward. PCWF tax receipts you have received are valid and all money we raised on behalf of PCWF is being used to achieve our mission.

We are excited about this next step and as we continue to mature as an organization, we are always interested any feedback on how we can improve our operations. Let us know how we are doing, or better yet, let us know how you can help us eliminate the challenges of PWS!

We look forward to your continued support and please feel free to contact me directly if you have any questions.

• We are lucky to have families from all over Canada (BC, Alberta, Ontario, Quebec) joining together to make a difference.
• We are lucky to have friends like 6 year old Abbey Henry who raised $1000 for PWS research.
• We are lucky to have Doctors and leading researchers like Dr. Berall, Dr. Wevrick, Dr. Strong and Dr. Miller dedicating their professional lives to helping our children.

Overall, we are lucky because we are in a position to work together to help our children… which is what it is all about. I know we are lucky and the question I have is… are you ready?

If you are interested in getting involved and helping eliminate the challenges of PWS, please VOLUNTEER.

Keegan Johnson,

President and Chairman, FPWR Canada