Issue #3 – “Oh Canada” – July 2009

Oh Canada

Oh Canada - Canadian Flag - One Small Step NewsletterTogether we all can achieve more!  In the last month PWS organizations from across Canada have joined together to eliminate the challenges of Prader-Willi Syndrome.  We are proud to announce that FPWR Canada is now Canada’s national PWS organization and has united with the CPWSO.  In addition, all of the provincial PWS organizations including BC, Alberta, Ontario and the newest organization in Quebec have also joined to show a united front in our efforts.  We are also welcoming individuals from across Canada in provinces without a formal provincial organization.

In the last month, I have had conversations with families with Prader-Willi from across the country.  I have heard stories of pain and I have heard stories of success.  The common element is that people believe we can make a difference in the lives of people with PWS if we work together.  There is a growing momentum across Canada as people pitch in by volunteering, donating, attending events or just signing up.

We all know if we are going to start eliminating the challenges we all have some work to do.  As the new National organization we are going to get started right away.  Here are four committees that are starting immediately.  If you would like to learn more feel free to contact the committee chair.

  • National Advisory Committee – Chaired by Joanne Taylor of BC ( this committee will begin by launching a Canada wide survey to assess the challenges of people with PWS across Canada.  If you would like to have your say, please contact Joanne.
  • Growth Hormone Committee – Chaired by Zdravko Crne ( this committee is tasked with solving the problem of getting access to GH.  Please contact Zdravko if you would like to get involved.
  • PWS Calendar Committee – Chaired by Susan James ( this committee is putting together the first ever national PWS calendar with people from across Canada.  Please contact Susan if you are a family with PWS and would like to sign up to receive your complimentary copy.
  • National Conference Committee – Chaired by Pat Crne ( this committee will be organizing our first ever national PWS conference on May 15-16.  Please contact Pat if you would like to sign up to receive your complimentary DVD of this years conference.

You can find more information about us at  I look forward to working with all of you to eliminate the challenges of PWS.


Keegan Johnson (Chairman and President, FPWR Canada)

ps. If you haven’t heard yet, our annual walkathon has gone national as well.  Checkout the prizes and new online fundraising tools at

Record breaking attendance at our third annual One Small Step Gala!

In only our third year, we welcomed over 650 guests who helped us raise over $60,000 for Prader-Willi Syndrome (PWS) research. We were honoured to have representatives from across Canada and the US, including Joanne Taylor and Cheryl Gagne from BCPWSA and Dr. Theresa Strong and Alice Viroslav from the FPWR. Our increase of almost 50% in fundraising along with the international attendance demonstrates the growing momentum behind uniting Canada to eliminate the challenges of Prader-Willi Syndrome.

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.

FPWR Canada Conference Informs and Inspires PWS Families to Choose to Believe…

About FPWR CanadaThanks to those who attended our 1st Annual Medical Research Conference on May 9th, 2009 at the Ontario Science. If you were unable to attend our conference, click on 2009 Conference Summary to read and hear about everything you missed. Understand why Canadian families are “choosing to believe…” This package includes:

  • 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 ( 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 and on YouTube

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 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.

One SMALL Step Walk/Run 2009

 FPWR Canada is hosting its 5th annual One SMALL Step Walk/Run on Sunday, August 16th, 2009. You can choose between 2km or 4km walk or challenge yourself with our 5km run.  Join 500 people at Centennial Park in Etobicoke, Ontario OR take a walk in your own neighbourhood in your own province.  We have expanded our event to include all Canadians interested in supporting PWS. To sign up now go to .

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: ). It’s fun and easy, so set your goals high and watch your thermometer rise! Register (click on register button to access convio page: ) 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.