Issue #2 – “One Step Closer” – March 2009

1 out of every 15,000 births

Has anyone told you that you were blessed with a child with Prader-Willi Syndrome for a reason?  What do you think? I do not profess to know if this is true or not, but what I do know is that we are lucky.

  • 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

Progress Report

2008 was another exceptional year for FPWR Canada. Our annual gala and walkathon continue to be a huge success and we are now seeing increased fundraising from all over the country. All of this means we have additional funds to support research! We have funded two projects from Dr. Rachel Wevrick of the University of Alberta for a total of over $85,000. At the upcoming Medical Research Conference we will be announcing the funding of two additional research projects with the funds raised in 2008.

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.

Third Annual One Small Step Gala

Don’t Miss This Weekend of Hope and Inspiration! Tickets on SALE NOW! – Register by April 1st and save $25!

The Foundation for Prader-Willi Research, Canada will welcome back more than 800 guests for a special fundraising event. This third year promises to be a high-energy celebration of cocktails, hors d’oeuvres, exquisite dining, and a deluxe open bar to complement an evening of dancing, enjoyment, live auction, silent auction, plus raffle and door prizes.

Join us at our 3rd annual gala on Friday, May 8th, 2009

Date: Friday, May 8, 2009

Place: Terrace Banquet Centre, 1680 Creditstone Rd., Vaughan

Time: Cocktails 6:30 p.m., Dinner 7 p.m.

Tickets: $100 per person

Contact: Michelle Cordeiro or 1-866-99-FPWRC X252

To view photos from past years Galas please click here.