2016 Fall Newsletter
2016 IPWSO Conference- A look back!
It only seems like yesterday Tanya Johnson, 2016 IPWSO Conference Chair and Host began the 12 month countdown to the 2016 IPWSO Conference. FPWR Canada was very proud to host the 9th International Prader-Willi Syndrome Organisation Conference in the beautiful City of Toronto, Ontario from July 20 – 24, 2016!
We welcomed over 545 PWS researchers, families, medical professionals, and professional care givers from 38 countries around the world. We shared one common goal – “Building Global Community’ together to eliminate the challenges of PWS. What an incredible experience! Internationally we are working hard to eliminate the challenges of PWS through support, advocacy and research.
We are pleased to provide you with access to the Conference program, pictures, audio recordings and copies of a number of presentations as provided by guest presenters. The Live Streaming Videos will be available in the coming days so keep posted – http://www.fpwr.ca/news-events/events/ipwso-conference/
Thank you Tanya – thank you to our Committee Chairs, Co-Chairs, and volunteers – your hard work and commitment to success was outstanding!
Thank you to our financial sponsors and exhibitors!
Thank you to the wonderful team at the Sheraton Hotel for your attention to our needs!
Best wishes for every success to Cuba in hosting the 10th IPWSO Conference in 2019!
Current Research Funding – FPWR Canada ($501,788)
- “Impact of Carbohydrate Restricted Diets Upon Growth and Hyperphagia/Food Anxiety in Prader-Willi Syndrome Children”Ann Scheimann, MD. John Hopkins University, Chicago, $150,525 CADPrader-Willi syndrome is a disorder of genetic imprinting characterized by common features including early feeding problems and failure to thrive followed by gradual weight gain and development of hyperphagia. Long-term practice has recommended use of dietary restriction using a variety of approaches for weight control/obesity prevention of obesity with some recent anecdotal data suggesting benefits of carbohydrate restricted diets upon hyperphagia/anxiety. A pilot study of implementation of a modified Atkins diet in school aged children with Prader-Willi syndrome is proposed to assess the impact upon behavior and hyperphagia.
- “Loss of MAGEL2 and hypotonia in Prader-Willi syndrome”
Rachel Wevrick, Ph.D.I Professor, University of Alberta, $116,791 CAD<Dr. Wevrick has been investigating hypotonia (low muscle tone) in a mouse model of PWS (Magel2 mouse). Magel2 deficient mice have reduced endurance and strength, and Dr. Wevrick believes this might be because they fail to use energy from food properly. Mice will be fed diets of different fat/carb composition, and with and without supplements to gain an understanding of what kinds of diets and supplements are optimal to improve strength and endurance in this PWS model. This study may also establish parameters for evaluating new drugs that are being developed for other forms of muscle disorders and measure their effectiveness in PWS.
- “Mitochondrial Complex I Dysfunction in Prader-Willi Syndrome: A New Therapeutic Target”Ingrid Tein, MD. Hospital for Sick Kids Toronto, Ontario, $149,472 CADDr. Tein has evidence of mitochondrial (“powerhouse of the cell”) deficiencies in PWS, which may contribute to many symptoms including low endurance, poor cognitive development, poor growth. CoQ10 may overcome many of these deficiencies. Although often used by parents of those with PWS, evidence of clinical benefit has been lacking. This stringent study will measure the effects of CoQ10 in adolescents with PWS, examining motor function, strength, fatigue, physical activity, attention and quality of life in a randomized, double bind controlled clinical study. The effect of CoQ10 of free radical formation will also be measured. The investigators anticipate they will be able to demonstrate the benefits of CoQ10 in PWS.
- “Role of Melanin Concentrating Hormone in an animal model of Prader-Willi Syndrome”Michiru Hirasawa DVM, Ph.D., Memorial University of Newfoundland, $85,000 CADDr. Hirasawa’s study will investigate a potential link between Melanin concentrating hormones (MCH), a chemical found only in a certain population of nerve cells within the hypothalamus, and PWS, given the known role of MCH in controlling body weight and reproduction. This will be the first study on MCH in a mouse model of PWS, which may bring promising results for identifying a new therapeutic target.
For detailed information on these and other funded projects please go to https://www.fpwr.org/fpwr-funded-projects/
Update on GH Access Working Group
The Growth Hormone application submission process has been extensive with changes in direction and strategy along the path over the past number of months however, Holly Sine, Lead (volunteer) has completed outstanding work!
Following, almost to the letter, the requirements from the Ontario Drug Benefit Program (ODBP), 25+ clinical articles, provided by the endocrinologist working closely with FPWR Canada, have been reviewed and summarized. These summaries are now being prepared to support the overall clinical summary for the submission.
Four key elements have been created for the purpose of our submission, namely, Linear Height, Vertical Growth, Body Composition and Cognition (Developmental Manifestations). Documentation is being prepared for both infants (4 mos – 38 mos) and children 3 years – 14 years). We are reviewing an additional 13 articles – 6 observational; 4 GH deficiency and 3 safety articles as related to scoliosis, sudden death and IGF levels.
With regard to the Randomized Clinical Trials – our clinical summary for Linear Height and Vertical Growth is divided into infants and children – the summation for infants contains reference to 200 infants and the summation for children contains reference to 180 children.This work will be submitted to the endocrinologist (working closely with FPWR Canada in this preparation) for review and any required changes.
AxSource, the consulting company FPWR Canada has secured, will be completing a number of added requirements such as:
1. Pharmaco-Economic Section
2. Periodic Safety Update Reports component (Canada)
3. Submission Compilation – Physician Submission
4. Screening (notice to FPWR Canada)
We will be reaching out to parents asking for support in completing the Patient Evidence Forms as required by ODBP. Once this work is completed, we will include the required submission cover letter, financial impact analysis and Executive Summary. As mentioned during our FPWR Canada update at the 9th IPWSO Conference, our target submission date is focused toward the end of October 2016.
One SMALL Step! Fundraising made easy! FPWR Canada needs YOU!
Open a page and send by email, Facebook or Twitter
Please support our Canadian Virtual Walks. You can Open your own virtual walk page and distribute to your friends, family and community. An easy and quick way to fundraise from the comfort of your home.
Do you know of a small shop or a friend that owns a business that would like to help spread awareness and raise funds at the same time?
Ask them to sell our OSS footprints. Each footprint is $2.
To order your footprints contact: email@example.com
Recurring Monthly Donations… You won’t even feel it!
DONATE A CAR CANADA Accepts Vehicle Donations for FPWR Canada
You can turn your vehicle donation into generous dollars to support Foundation for Prader-Willi Research Canada!
Working on our behalf, DONATE A CAR CANADA will accept your vehicle for donation – running, or not! Old or new!
There is no cost to you, and the process is incredibly easy!
DONATE A CAR CANADA will facilitate all aspects of your car donation from the pick up to the final sale, ensuring that your vehicle will be sold for the highest sale outcome possible. They will then forward the net proceeds on to FPWR Canada.
Donate your car to FPWR Canada: https://donatecar.ca/
org/donate.php?charitypage= FoundationPraderWilliResearchC anada
DONATE A CAR CANADA accepts Vehicle Donations for Foundation for Prader-Willi Research Canada.
They provide free towing in many areas across Canada, or you can drop off your vehicle to maximize your donation. When you Donate your RV, boat, motorcycle or other vehicle to Foundation for Prader-Willi Research Canada through DONATE A CAR CANADA, it will either be recycled or sold at auction depending on its condition, age and location.
Donate A Car Canada will look after all the details to make it easy for FPWR Canada to benefit. After your Vehicle Donation is complete, Foundation for Prader-Willi Research Canada will send you a tax receipt within 45 days!
One SMALL Step Events! GREAT JOB!
Thank you for completing your events:
Belinda and Jack Jones (Brampton, ON)
Tammy Renwick (Grande Prairie, AB)
Nadia Spetrini (Montreal, QC) – Bowl-A-Thon
Karen Armstrong, Andrew & Jessica McVey, Brad & Amy Montroy, Tom Balint & Devon Zhang (OSS Ottawa, ON)
Irene McDougall (OSS Richmond Hill, ON)
FPWR Canada 8th Annual Golf Tournament
On Sunday, September 18 Tad Gacich, FPWR Canada Board of Directors, hosted the 8th Annual Golf Tournament.
60 golfers played 18 holes in support of Prader-Willi Research. Golfers enjoyed lunch, driving range, putting contests, raffles and dinner.
The tournament raised $13,000. FPWR Canada thanks Tad for his fundraising success and continued support. Thank you Tad.
Special Event Fundraiser goes to…FPWR Canada
The Residential Low Rise Forming Contractors Association of Metropolitan Toronto and Vicinity reached out to FPWR Canada to submit a proposal for their decision on what charity to raise money for – FPWR Canada was the chosen charity.
Wednesday, July 13 marked the 26th Annual LRF Golf Tournament at Eagles Nest Golf Club in Maple, Ontario for a beautiful summer day of golf and raising money for charity. 100 golfers attended the event, raising $8,700 for PWS research – the second highest amount ever raised.
FPWR Canada thanks Grace and her committee for organizing an incredible golf tournament!
Special Events – Wanna host one?
Special thanks to all people who do special events to raise funds:
Notably this year, Matt Simms from New Brunswick who had a Garage Sale and sent over $1000 to FPWR Canada.
This was fantastic!
WE need YOUR help!
Special events are just that – Special. The event can be a function, activity, or occasion that raises money for a charity – FPWR Canada.
With creativity and out-of-the-box thinking a small group of people can hold Special Event Fundraisers with great impact. Not only are you raising money for FPWR Canada, you will be bringing awareness to Prader-Willi Syndrome.
Why run a special event?
Why run a special event?
- To raise money for Foundation for Prader-Willi Research Canada
- To raise awareness for your family, Prader-Willi Syndrome and FPWR Canada
To gather a community together to celebrate its initiatives in running a Special Event can be small. They do not always have to be grand events. Some of the more common types of special events are:
- Golf Tournaments – Tee Up for PWS by inviting your friends and family to a day on the course at your local golf course
- Bowl-A-Thon – Rent out some lanes at your local bowling alley and Invite your friends and family
- Neighbourhood Yard Sale – One person’s trash is another person’s treasure. Gather your neighbours and have a community yard sale
- Carnival Event – complete with bouncy castles, games of chance and treats for one and all.
- Casino Night – Get dressed up and have a fun night out with your friends and family
- Talent Show – Everyone has a hidden talent they want to show off
- Read-A-Thon – Do you have a reading month at school? Last year a family supported FPWR Canada by having a Special Event called “Cuddle-Up and Read”, which raised $2,600. The child’s whole school was involved.
- Recycling drive – have your neighbours collect recyclables for a month and donate the proceeds to FPWR Canada
Your FPWR Canada team are happy to provide on-going support for any special event – big or small. We are behind you 100%.
Montreal Live Life FULL Gala – Join us!
An amazing night in Montreal.
Come enjoy a five course meal, dance to the sounds of DJ Goldstar and have a chance to win amazing prizes…
Do not miss this amazing annual event. All proceeds will go to FPWR Canada.
Buy your tickets NOW:http://www.fpwr.ca/news-events/events/montreal-gala/
Toronto Live Life FULL GALA! – Coming in February!
Save The Date!
Live Life FULL Gala – Toronto 2017
Thank you to Phyllis Thompson, chair of the Live Life FULL Toronto Gala 2017
If you would like more information on donations or sponsorships or if you would like to be part of the gala planning, please contact Phyllis Thompson at firstname.lastname@example.org
Date: Saturday, February 4, 2017
Location: Peter and Paul Banquet Center, 231 Milner Ave. (Markham Rd. and Hwy. 401)
Theme: Charity Casino and Dance
Theme: Charity Casino and Dance
More info. coming soon. Check our website for updates – www.fpwr.ca
An invitation from OPWSA
REGISTER NOW: Wines Among the Vines Fundraising Event
Register now to join us for an evening of fun, food, friends, family, and wine…lots of wine paired with your favourite
candies and chocolate at OPWSA’s Wines Among the Vines wine tasting fundraising event for adults.
The Wines Among the Vines event promises to be a fun social evening to raise funds for OPWSA’s key programs, andwill also be a great opportunity to introduce your friends and family to the PWS community.
Limited tickets remain, so don’t miss out on this wonderful evening for a great cause! Don’t miss out on this wonderful evening for a great cause! For more information or to register, visit:
The event will take place at
Konzelmann Estate Winery in
Saturday, October 15th from 7:00pm -10:00pm.
OPWSA will be hosting our AGM at the estate from 6:00pm – 7:00pm for those wishing to attend.
To view this newsletter in french, please go to: http://fr.fpwr.ca/2016/newsletter/bulletin-de-nouvelles-dautomne-2016/