FPWR Canada – Growing in 2011

Message from the President

2010 has brought both positive changes in the Prader-Willi syndrome community and significant advances in PWS research.  We remain focussed on our mission to eliminate the challenges of Prader-Willi Syndrome and have moved forward in multiple areas.

Research –Phase I of the Prader-Willi Syndrome Research Plan is now available! The plan outlines the initial steps to eliminate the challenges of PWS and is based on the  recommendations of over 60 of the world’s leading scientists.  This represents a huge step forward for PWS research.

Fundraising – We have created an international fundraiser, the One SMALL Step Walkathon.  The Prader-Willi Syndrome Association in the US (PWSAUSA) is also supporting this event and all  proceeds will fund the PWS Research Plan mentioned above.  We already have 35 locations and with your help we can reach our goal of over 50 locations in 2011.  We are also hosting our Annual Gala on April 15th

Organization – We are continuing our work with the Ontario Prader-Willi Syndrome Association (OPWSA) as well as other PWS organizations across Canada.  We are now also in close contact with PWSAUSA , not to mention hosting walkathons in 7 countries including Belgium, Australian, France, Germany and the UK.

In 2011, we are planning to improve our fundraising capacity and execute a significant portion of the PWS Research Plan.  We continue to be a grassroots organization and our success is driven by your support.  Thank you for your continued donations, time and expertise.  We look forward to working with you to make 2011 our best year ever.


FPWR Canada Annual Gala

Friday, April 15 – 5th Annual Gala – Tickets are hot off the press!  Join 500 people for dinner, dancing and silent auction at the elegant Terrace Banquet Centre and to raise money for PWS research. To see pictures from last year’s event, for more details or to purchase tickets on line click here: http://www.fpwr.ca/news-events/events/annual-gala/ To view Keegan Johnson’s speech from last year’s gala and hear how the PWS Community is coming together click here:  http://www.youtube.com/watch?v=jmqS-etPJb0


FPWR Canada National Conference

Saturday, April 16 – Parent Sharing Day – OPWSA partners with FPWR Canada to deliver an interactive parent sharing session for all caregivers of individuals with PWS (Details coming soon)

Sunday, April 17 – 3rd Annual National Conference – Join us and learn about the ABC’s of Prader-Willi Syndrome to address anxiety, behaviour and communication through the advancement of research and education.  Speakers include PWS researchers, medical professionals and parents who will present the latest findings in the recently FPWR funded behavioural research projects.  Speakers include, Theresa Strong (mother of teenage boy with PWS and head of Scientific Research Board of FPWR and Elizabeth Dykens, world renown PWS Researcher and expert in the area of behaviour, psychiatry and developmental disabilities (with a focus on PWS).

Register by March 1st, pay only $50 for Saturday and Sunday AND all children are FREE (for Kid’s Camp Program on Sunday).  For more information or to register now, go to:http://www.fpwr.ca/news-events/events/national-research-conference/

New!  Educator’s Session – Recruit your child’s teacher or support worker to learn more about how to address anxiety, behaviour and communication to help all individuals with PWS become more successful and independent.  Click here to see flyer and invite your educators to attend for free:  http://www.fpwr.ca/wp-content/themes/karmatheme/documents/educator_poster_final.pdf


Prader-Willi Syndrome Research Plan – Phase I

The PWS Research Strategy represents a significant milestone in the advancement of PWS research towards our common goal of eliminating the challenges of Prader-Willi Syndrome.  The plan outlines the types of resources as well as the research and training required to achieve our goal.  The research plan was developed with input from more than 60 leading PWS experts from around the world, who came together for the Prader-Willi Syndrome Research Strategy Workshop in late 2009.  Parent-advocates from FPWR and PWSA(USA) also provided their input.  Now that we have created the plan, we are focused on completing all of Phase I as soon as possible.  To date, only about 25% of the $1M required to complete the plan has been funded.  Our goal is to have the One SMALL Step Walkathon fund the rest.  We will also bring the researchers back together to track our progress and create a Phase II plan.

We encourage everyone to take a look at the plan to see how we are going to begin eliminating the challenges of Prader-Willi syndrome.

“He who fails to plan, plans to fail” – Anonymous


One SMALL Step Walkathons

Would you like to help implement the PWS Research Strategy AND be entered to win an Apple iPad?  FPWR is looking for hosts for our 2011 One SMALL Step walks.  All hosts will be entered to win an Apple iPad!  Last year, our One SMALL Step events collectively raised over $225,000 for research; with your help, we can exceed $1,000,000 in 2011!! Click here to see our slide show from 2010 and see how families from all over the world took one small step for Prader-Willi syndrome.

Hosting an event in your community will help raise much needed funding for the PWS research. We are on a mission to eliminate the challenges of Prader-Willi Syndrome through research; increased funding will lead to increased research.

Rest assured that the One Small Step Walk Committee will be there to support you throughout the planning process. Our team of experienced planners will provide you with a planning guide as well as support and resources. As an event host, you will be invited to join monthly conference calls to work through the planning process as a team as well as receive frequent emails with tips and reminders to help during the planning process.  Of course as part of our team we will be available to answer your questions at any time.  We are here to make the planning process as simple as possible!

To be entered to win the Apple iPad, register to be a One SMALL Step walk host online at http://onesmallstep.fpwr.ca by February 28th.  The winner of the apple iPad will be announced April 17th.

We will kick off our event planning January 30th with our first team conference call!  Please contact Susan.Hedstrom@fpwr.org for details.

Can’t host an event but want to help?  FPWR is looking for One SMALL Step corporate sponsors! Do you know someone in a company that might be interested in sponsoring our event?  If so, please contact Susan.Hedstrom@FPWR.org.  For a minimum $5000 donation, the sponsor logo will be printed on our event t-shirt distributed nationwide.

Thank you for joining us as we work to eliminate the challenges of Prader-Willi Syndrome. Together we can make a difference in the lives of people with PWS.


Upcoming Events and Latest News

FPWR families have been busy raising money and moving the PWS community forward.  Here are just a few of the recent highlights and upcoming events:

June 10 – 2nd Annual Guelph Gala – Save the date!  Details coming soon.

June 16 – 3rd Annual Golf Tournament – Save the date!  Details coming soon.

  • PWSA(USA) and FPWR working together – It’s a small community and we all want to use our time and energy as efficiently as possible. The Boards of PWSA(USA) and FPWR met in September 2010 to discuss how best to work together to achieve our common goals.  It was a very productive meeting, with several cooperative initiatives discussed.  With respect to research, both PWSA(USA) and FPWR will be supporting the One SMALL Step Walkathon, with all proceeds dedicated to funding the priorities defined in the jointly developed PWS Research Strategy.
  • iPS Cells – One of the FPWR projects funded in 2010 has already yielded exciting success! Creating iPS cells was rated as the number one priority by our researchers.  iPS cells are basically live PWS neurons, which allows researchers to study gene expression in PWS more effectively.  Read about Prader-Willi Syndrome iPS cells athttp://fpwr.org/blog/research/10/09/pws-ips-cells-are-here
  • FPWR 2010 Conference – Checkout a summary of FPWR in the US annual conference in Bethesda, MD in September! View a summary of the talks: http://fpwr.org/fpwr-2010-conference-wrap

Leave a Reply

(will not be published)