FPWR Canada April 2015 newsletter

Our mission is to eliminate the challenges of Prader-Willi Syndrome through the advancement of research.

January to April 2015 at FPWR Canada

 Join FPWR Canada as we “Share Solutions” at the 2015 National Conference.

May 30-31   This conference includes presentations from a range of PWS experts. Information for parents and caregivers of children and adults with PWS.   Presenters include :

  • Dr. Rachel Wevrick, Ph.D., Professor of Medical Genetics, University of Alberta
  • Dr. Andrea Haqq, M.D., Pediatric Endocrinologist at the Stollery Children’s Hospital and Associate Professor of Pediatrics, University of Alberta
  • Marc Landry, Occupational Therapist, Sensory Processing and Self Regulation (www.marclandry.ca)
  • Keegan Johnson, “Give Rare”, Chair, FPWR Canada Board of Directors and Founder of Zenzaga (www.zenzaga.com)
  • Dr. Harold J. P. van Bosse, M.D. (by Skype) – specializing in Pediatric Orthopaedic Surgery, Shriners Hospital for Children, Philadelphia
  • Tanya Johnson – Co-Founder FPWR Canada, Specialist in Special Education (Behaviour Management), 2016 IPWSO Conference Chair and Host

For more information, the agenda, hotel accommodations and to register online, please visit: http://www.fpwr.ca/news-events/events/national-research-conference/


Toronto will be celebrating their 9th Annual Live Life FULL Gala on Friday, April 17 at Terrace Banquet Centre.

This elegant Gala event for 400+ guests will include cocktails, hors d’oeuvres, antipasto bar, exquisite dining, open deluxe bar, and live entertainment.  All activities complement an evening of dancing, live and silent auctions, raffle and door prizes while raising funds to support children and adults who have PWS.   For more information about the Gala please visit:  http://www.fpwr.ca/news-events/events/annual-gala/

 Guelph Live Life FULL Gala

Microsoft Word - Document1An unforgettable evening you won’t want to miss!   Date: Friday, June 5, 2015 Place: Creelman Hall, University of Guelph Time: Registration opens at 6:30pm Ticket Price: Early bird tickets are $100 per person. As of May 25, tickets will be $110 per person.   You may purchase tickets at http://www.fpwr.ca/news-events/guelph-gala/   Event includes:

  • A sit down dinner
  • Drink tickets
  • A silent auction
  • Live entertainment featuring the Dave Murphy Band


Mentor College Fashion Show proceeds to support FPWR Canada.

The 19th annual fashion show, Vissi D’Arte, takes place onSaturday, April 18, 2015 at 7:00 pm. Benefits from this year’s show will benefit SickKids Foundation and Foundation for Prader-Willi Research Canada. Doors open at 5:45 pm with Silent Auction at 6:00 pm. The Fashion Show begins at 7:00 pm sharp. To purchase tickets:  fashionshowtickets@mentorcollege.edu

‘The Trooth and Nuthin’ But the Tooth” A Fairy Tale by Barry Fillier

fairytaleThis classic bedtime story is given new life and new twist within the pages of Barry Fillier’s story book.  There is a plan by Crown Da-kay and his crew to take over Fairyland using black magic. With the help of a little girl named Makena and Cal, a Tooth Fairy they arrive in Fairyland just in time to stop the cavity crew and rescue Rooti, Cal’s best friend. A new timeless classic that explains where the Tooth Fairy gets the money or prize that is left in place for the baby teeth and what the Tooth Fairy does with the teeth. The book launch is April 11, 2015 at the Chapters in Ajax with $1.00 for every book sold being donated to FPWR Canada.  Mr. Filler’s grandnephew has Prader-Willi Syndrome.  Mr. Fillier may also be attending a number of One SMALL Step walks in Toronto area to conduct book-signing opportunities. For more information on Barry Fillier and “The Trooth and Nuthin’ But the Tooth”, visit www.anewtoothfairyadventure.com

Upcoming ONE Small STEP events taking place in Canada!

onesmallstep2015Thank you to everyone that has registered a walk. Our returning hosts: Brampton hosted by Jack and Belinda Jones Calgary hosted by Stephanie Thomas Delta hosted by Suzanne Szabo MacDonald Edmonton hosted by Miranda Apesland Grande Prairie hosted by Tammy Renwick Happy Valley-Goose Bay hosted by Kristin Simms Montreal-Parc Felix-Leclerc hosted by Adrianna De Luca Montreal-Hampstead park hosted by Stacey Howard Richmond Hill hosted by Irene McDougall and Nubia Coutinho Winnipeg hosted by Elaine Johnson Quebec hosted by Elyse Lavoie et Rhea Utley Toronto hosted by Ryan and Olga Cohen Saskatoon hosted by Jen and Glen Olauson Ottawa hosted by Andrew McVey And new this year: Saint John hosted by Jack and Amanda Gardner Halifax hosted by Joy-Lynn Suttle, Tasha Tyrell and Belinda Jessome Fairview hosted by Diana Baird   And it’s not to late to register a walk in your area…

Thinking of hosting a ONE Small STEP Walk?

This tutorial will give you all the information you need. Check it out today! https://www.youtube.com/watch?v=HHjopKXDIhY

Mental Health Workshop – March 2015 outcomes

On March 1-3, 2015, approximately 45 top mental health professionals from around the world gathered in Bethesda, Maryland to discuss behavior and mental health in Prader-Willi syndrome (PWS). Slightly more than half of the group were experienced PWS clinicians or scientists, while the remainder had expertise in mental health research for other neurodevelopmental disorders.

The goal of the meeting was to develop a research strategy to advance the science of mental health in PWS. Mental health and behavioral problems remain a major challenge for individuals with the syndrome and their families and caretakers, with significant impacts on quality of life. Workshop participants sought to identify and prioritize key research questions, as well as highlight current opportunities and needs. Recommendations were made with respect to resource development, collaborative opportunities, and targeted research initiatives. A full report of the Mental Health Workshop can be found on www.fpwr.org

This workshop was made possible through the financial support of the Foundation for Prader-Willi Research, FPWR Canada and PWSA-Colorado.

Happy Sweet 16 Catherine!


Catherine celebrated her sweet 16 birthday in ‘Tiffany’ style. Most 16 year olds ask for material things. Not Catherine, she asked for donations to FPWR Canada because her younger sister has PWS.

She raised $630 and donated every penny in hopes to find treatments that will help her sister and all people living with Prader-Willi Syndrome. What a beautiful girl, inside and out!

Nominate your PWS Community Champion

FPWR Canada 2016 IPWSO Conference, Toronto,  Ontario (Canada) July 20 – 24, 2016   For those who belong to IPWSO member associations and those who are members of other PWS Associations, FPWR Canada presents: “Nominate your PWS Community Champion”.   This is an excellent opportunity for your organization to nominate your “PWS Community Champion” and have this person’s name eligible for FPWR Canada’s 2016 IPWSO Conference Prize Promotion.  The prize will consist of a trip for two to Toronto, Ontario Canada and includes airfare, accommodations, Conference fees up to maximum of $2500 CDN.   For additional information please contact FPWR Canada at info@fpwr.ca or please go to:  http://www.fpwr.ca/2015/announcements/nominate-your-pws-community-champion/

A very special Thank You to all of our volunteers.


Our volunteers are the heart of our community.

Volunteer Awareness Week is April 12 – April 18. Theme: The Many Faces of Volunteering.

PWS Awareness Fundraising Ideas

Do you have a fundraising idea you want to share with FPWR Canada? We want to hear it!   We are opening up our mailbox for you to submit your fundraising ideas to help us spread awareness about PWS throughout Canada.   Click here to send us an email with your ideas!

Topics: Newsletters

Michelle Cordeiro