Issue #1 – “Welcome” – August 2008

Newsletter Issue 1 Header

The cure for Prader-Willi Syndrome (PWS) just got one step closer … but let’s start at the beginning.

‘We’ are the Foundation for Prader-Willi Research, Canada (FPWRC). We are a Canadian organization dedicated to eliminating the challenges of PWS through the advancement of research. We do this by leveraging the greatest Canadian trait of all … working together. We work closely with our partners in the U.S. (the Foundation for Prader-Willi Research) to run events, raise money and fund the best PWS research from around the world. If the research can help our children, we’ll find it and if we find it we’ll fund it!

Let’s face it … PWS is rare, with an incidence rate anywhere from 1 / 12,000 to 1 / 20,000. What we also know is that the answers to PWS are out there. What this means is the only way we can make a difference for our children is by working together … and that is what we are all about.

This is our first ‘One Step Closer’ newsletter, focused on brining Canadians interested in eliminating the challenges of PWS closer together and bringing you the latest information on our fight. Check out what research is going on, what events are coming up and learn more about the families and professionals involved in our fight. Help us take One Step Closer to eliminating the challenges of PWS.

Keegan Johnson, Chairman, FPWR Canada


Dr. Rachel Wevrick, PWS Researcher and Professor of Medical Genetics at the University of Alberta

“Scientific advances in the field of genetics have been realized at an exploding rate in recent years.  This trend, coupled with the research focus of the FPWR and the FPWRC bodes well for further exciting research investigating the causes of PWS and for the development of innovative therapies in the near future.”

Dr. Jennifer Miller, PWS Researcher and Endocrinologist, University of Florida

“Over recent years we have studied over 100 people with PWS. What we are seeing is that newer treatments, such as growth hormone, have had a positive impact on both the physical and cognitive development of people with PWS.”

Dr. Glenn Berall, Chief of Paediatrics, North York General Hospital

“It takes a community to advance science through research. To make a difference, we need researchers, the medical community, and the entire PWS community to work together. We look forward to playing our part, alongside the FPWRC, in our mission to eliminate the challenges of PWS through the advancement of research.”

There are four research studies that Dr. Berall and his associates need PWS family involvement in. The studies are listed below. If you are interested please call 416-756-6222 and ask for the contact person listed below.

1. A study of social support needs in PWS.

  • Task: Filling in a questionnaire and permission to review chart information.
  • Contact: Eleanor Fung

2. A study of the use of CoQ10, carnitine, creatine in PWS.

  • Task: Answering questions by phone interview or in person and permission to review chart information.
  • Contact: Aurore Scouarnec

3. A study of hyperphagia in young children with PWS: ages up to and including 10 y.o.

  • Task: Filling in a questionnaire, and an interview by phone or in person, and permission to review chart information.
  • Contact: Nazli Ghiazi

4. Measuring metabolic rate in PWS.

  • Task: A measurement of indirect calorimetry pre and post start of Growth Hormone. (lying under a clear bubble hood breathing normal room air for 20 minutes).
  • Contact: Saqina
  • FPWR and its partner FPWRC HAS FUNDED OVER $1,000,000 DOLLARS IN PWS RESEARCH SINCE 2003!!!

    That’s right!  We are one million dollars closer to the answers we need, one million dollars closer to securing the future for the children we love. Click here for more details.

    Want to find out the latest in PWS research? Click here to go to the FPWR Canada research blog.

    Upcoming Events

    4th Annual One Small Step Walk/Run – Etobicoke, Ontario – August 17th

    Join over 500 people on August 17th, 2008 at Centennial Park for a day of family fun, exercise and a nutritious lunch. Meet Dora and Sponge Bob in the kids area and get an autograph from Matt Stajan (#14) of the Toronto Maple Leafs. Collect pledges, set your goals high and you can win an all-inclusive trip for 2 to Punta Cana or a Nintendo Wii. Go to the Walkathon Page for more information about our 2km walk or our new 5km run.

    Register now: Walkathon Registration

    Dante 3rd Annual Walkathon

    FPWR Conference Washington, D.C. – Sept. 7-9

    Learn from the leaders in the PWS field. Dan Driscoll, M.D., Ph.D. and Jennifer Miller, M.D. from the University of Florida and Daniela Rubin, Ph.D. from Cal State Fullerton will be joining us on Sunday afternoon. These top researchers in the field will share their cutting-edge PWS research with us. For those of you who heard Dr. Miller speak last year, you know that you are in for a treat! And what a great opportunity to meet these hard-working researchers and ask questions!

    If these speakers are not enough you’ll have a chance to meet other PWS families and find out how other foundations have been successful at changing their children’s future. You don’t want to miss it.

    To register or learn more, go to