We’re Just Getting Started – February 2010

We are just getting started - FPWR Canada Newsletter2009 was our best year ever!  We provided $100,000  for new PWS research and raised over $250,000 for upcoming PWS research projects.  We expanded across Canada and strengthened our relationships with our friends from the US.  We co-funded the PWS Research Workshop, which brought 50 of the top PWS scientists in the world, together in Washington for an intensive 3 day workshop on PWS.

I am proud of what we accomplished in 2009, however I know:

  • Our children are not getting younger,
  • We need to do more,
  • 2010 is shaping up to be even better then 2009

This year we have already released our updated website (, that will help connect families from across Canada.  Check and see if you can find your child somewhere on our website.  If not, send us a picture and we’ll get it uploaded.

In addition, we have some amazing and creative new events on the go.  You can find more information and register at:

We are committed to eliminating the challenges of Prader-Willi Syndrome through the advancement of research.  If you would like to help (in any way), please contact me at … together we can make a difference in our children’s lives!


Keegan Johnson (Chairman and President, FPWR Canada)


Gala – May14th – Save The Date

Help us help others by attending our 4th annual One Small Step Gala Fundraiser on Friday, May 14, 2010 at the Terrace Banquet Centre in Vaughan, Ontario. This spectacular event includes cocktails, hors d’oeuvres, exquisite dining and a deluxe open bar to complement an evening of dancing, live and silent auctions, raffles, door prizes and so much more!

Spread the word today – invite your family, friends and colleagues to join us in support this great cause towards easing life’s daily challenges for many children and adults living with Prader-Willi Syndrome (PWS). Through continued research we believe that children with PWS can grow into independent adults with an improved quality of life! Together we can make a difference.  For more information please contact Michelle Cordeiro at or check our website, for more details coming soon.


FPWR Canada National Conference

Save the date May 15/16th.  We are hosting our second annual National PWs conference at the science centre in Ontario.  Speakers include:

  • Dr. Theresa Strong (Research chair for FPWR),
  • Dr. Haqq (Endocrinologist at Alberta University).

You can see video clips of our previous conferences on our website

FPWR Canada has full coverage of all speakers from our previous conferences available on DVD, to receive a FREE copy of this valuable information (along with our GH FAQ package), please email Susan James at

“Your conference may have saved lives today,” says Karen Balko, dietician at NYGH.


Makayla and Morgan Sell 46 Calendars

Beautiful children from New Brunswick with Prader Willi SyndromeFPWR Canada was excited to present their first National 2009-2010 Calendar of Possibility.  A warm thank you goes out to over sixty families from coast to coast who participated in the calendar.   Your wonderful photos, stories of accomplishments and care giving tips are an inspiration to others.  Thank you to those who have purchased additional calendars and helped create awareness of Prader-Willi Syndrome to all your family and friends.  We would like to make a special mention of Amanda and Jack from New Brunswick, who sold forty-six calendars and raised an amazing $690.  Their adorable identical twin daughters are Makayla and Morgan, the calendar’s featured children for September 2009.

Families of PWS may still receive one complimentary calendar on us by providing FPWR Canada with their contact information.  Please contact Susan James, Calendar Committee at: Additional calendars may be purchased at $15 each.  Please make a cheque payable to FPWR Canada and mail it to, FPWRC, 19-13085 Yonge Street, Suite #370, Richmond Hill, ON, L4E 0K2.


5th Annual Walk/Run raises over $110,000 for PWS research!

In the 5th year, 400 people completed their walk/run in Oakville at our new location, Shell Park and raised over $110,000 for Prader-Willi Research! Our main attraction of the day was Steve Mason – NHL® Star goalie! Steve Mason signed autographs and drew the ticket for our popular raffle that included his signed jersey. The winner of the Air Canada Vacations Grand Prize was Linda Starcevic from Hamilton. The winner of our new KPMG Team Grand Prize – A VIP box at the ACC for 10 people was the James family from Brantford.  Congratulations to all winners – your fundraising efforts paid off!

Highlights include:

  • Congratulations to the top fundraising teams and individuals: The Livingston Team ($11 000), Linda Starcevic ($7500), Phil Kuca ( $5600), Susan James ($4000) and Megan Hawkins ($3700)
  • Jenna Boukamp (7yrs, pws) completed her first 5km run AND completed the 2km walk too!
  • Congratulations to Natalie Wilby on her 5km run!

THANK YOU to every participant for making it possible to surpass our goal!!! Every dollar raised makes a difference in our children’s lives. Together we will eliminate the challenges of Prader-Willi Syndrome through the advancement of research and because of you we are one step closer.

In 2010 we are hosting an international walk/run.  Contact Tanya Johnson if you would like to host an event in your city.  For more details go to One SMALL Step Walk/Run



Melko Keran

Melko Keran

Melko Keran was born on June 2, 1932 and passed away on January 22,2010 at the age of 77.

Melko was married for 49 years and was the proud father of 3 children (2 boys and a girl) and a grandfather of 6 children.  He adored all of his grandkids but Alysa (PWS) was his youngest grandchild and was always on his mind.  He was a proud supporter of FPWR Canada and believed that she would grow up to have a great life.  He was a kind, funny, caring man and would do anything for his grandchildren.  His family has already donated over $2000 for Prader Willi research in his memory.  For more information, please visit

Larry Kelly

Our thoughts are with the Kelly family as they celebrate the life of Larry Kelly.  Larry Kelly, loving grandfather of Claire Kelly, passed away over the holidays.  In memory of Larry, the Kelly family raised over $7,000 for Prader-Willi Research.

Lauren’s Story

Lauren Story For tribute Page

Lauren is a 12 year old girl with Prader-Willi Syndrome. Although each day is a struggle for Lauren, she has grown into a very caring and giving young lady. Lauren currently sponsors a nine year old girl, in Tanzania, through Plan. She tries to do jobs around the house to help pay for the $35.00 a month cost. She has adopted “Jim”, a homeless man that lives outside our local McDonalds. Each week she takes him some sort of care package – from baked muffins, packed lunches, books, hand warmers…. the list goes on and on.

In the fall of 2008, Lauren decided, to grow her hair for cancer patients.  For more information, please visit


1st annual FPWR Golf Tournament raised over $5,000 on October 5th!

img_1501Tad Gacich of Gacich Financial organized his first annual golf tournament to raise money for FPWR Canada at Westview Terrace in Aurora, Ontario.  More than 40 golfers participated, learned about PWS and enjoyed a steak dinner.  Congratulations to Jason Skilnik for winning our putting game.


Thank you, Quebec!

Beautiful children from Quebec with Prader Willi Syndrome

On September 6, the newly formed Quebec organization raised over $2500 for PWS research at their first annual golf tournament.  Stay tuned for their 1st annual poker tournament on Feb 20th, 2010.


Computer Corner

Four sites parents may want to visit.

For over ten years Do2Learn has, through funding from several sources including the National Institutes of Health, used technology and the web to provide special learning resources for individuals with disabilities and the professionals and caregivers who serve them. We have worked with leading educators, clinicians, teachers and parents to develop serious games and learning material targeting specific deficits of individuals with neurological disorders including autism, Asperger’s Syndrome, fetal alcohol effects, OCD, attention disorders, learning and communication disorders and others.  The deficits we address include risky and disruptive behavior as well as lack of appropriate social, communication and daily living skills. freely offers, for your personal use, thousands of pages of the best of the resources they have developed and tested.  You do not need to register to use the site nor do they use cookies or any other tracking devices to intrude on your privacy. They find ads to be distracting and therefore do not put them on their pages. Their goal is to create a site that provides resources you may need in a respectful way.

Our philosophy

…This web site is dedicated to those individuals who see the world in different ways…

When we started, we hoped to help children with learning difficulties better understand and adjust to our world. At some level, this is still true. We, however, misjudged what we were exchanging with these children. If we in any small way help them function in this reality, they continually teach us much more about what reality can be. For years, psychologists have shown that our minds respond selectively to our senses. In working with individuals with mental disorders, we are reminded of just how separate our realities are. They showed us that the secret to communicating with anyone may be to suspend previous judgments of how the world must be sensed and separated, and to understand that life can be seen in many ways.

Our goal is to help each person communicate, survive and adapt to the bigger world around him or her, while respecting that all perceptions are valuable. Our hope is that this site will provide tools and solutions based on scientific research and clinical experience to help those with special learning and treatment needs. Our tools are designed to help them understand our world by:

breaking tasks into smaller, more easily handled parts

putting complex tasks together slowly, with guides to keep order

repeating activities often, letting the user set his own pace

allowing interactive customized and engaging tasks with positive rewards for success

Pre K to grade 2

Thousands of products to download from literacy, numeracy, signs/labels, sharing, and  arts & crafts.  This is a great site for parents who want to resources to use at home.

For Those families in Alberta:

About Us

After having spent several years working with parents and caregivers of children with special needs Joanne Birce, CEO and founder of ‘Special Kidz‘ felt it was time to create and launch a thorough and comprehensive online directory.  As the registrar at a Calgary special needs private school, she encountered many enquiring parents who were quite literally at the end of their rope. Their stories of the lengthy and often onerous struggle to find suitable programming and support for their child, which sometimes ended in even more frustrations, touched Joanne deeply.

Where can we go to have a psycho-educational assessment completed?  What programs are available for our child who struggles to make and keep friends?  Which schools offer an educational program for our child who has been diagnosed with Autism Spectrum Disorder?  These and many more questions came across her desk.

Joanne’s passion and dedication for this project inspires her on a more personal level, as well.  Her youngest sister, born in 1982, was born with multiple physical and cognitive disabilities.  Her family spent much of their time at the Alberta Children’s Hospital, and she was always amazed at the depth of support available to families, if they just knew where to look.

Finding the information you need, when you need it, can be an extremely overwhelming and daunting process.  Our hope is that we may provide parents and caregivers with all the information possible, right at the click of a mouse!

Resource for Community workers/Schools

A printable brochure that gives a quick reminder of what to do and not to do around behavior and appetite.


Featured Family/Person

Featured Person: Angela Kuffner – PWS adult living in Alberta

This is my story about my Portfolio.

My friend Ashley gave me a beautiful wooden binder which has a picture of me holding a rabbit engraved on the front.  She gave it to me because I went to her classroom to speak about Prader-Willi syndrome.Her gift gave me the idea to make a Portfolio and put things that are important to me in it. I always think of Ashley when I use it and I like to tell people that my friend gave it to me.I am proud to show my Portfolio because it shows what I achieved and the courses I take and memories of famous people I met.

Here are some of the things that I have in my Portfolio:

. My piano certificates for playing piano

. My Caring Clown Certificate

. A newspaper article that the volunteer coordinator at our hospital wrote about ‘Blossom, the Caring Clown’ which is Me!

. Autographed pictures of famous people I met

. Pictures and newspaper articles of the two bowling teams that I belong to.

. Women’s Abuse Course (I took this course two times)

I joined Toast Masters Club where we practice making speeches.  I joined J.U.S.T. Club which means, ‘no Judging, Understanding, Sensitivity and Tolerance’ and we make presentations to the community about ‘how to stop bulling’.In January, I made a presentation with J.U.ST..  It was about what it is like to live with Prader-Willi syndrome.  I talked about the book “A Recipe for Success” that Dr. Shelley Kinash wrote after she did research on people with PWs and their families.  Shelley included two articles that I wrote in her book and I am very proud of that.  One article is called ‘Prader-willi Syndrome Misconceptions’ and one is called ‘How to Support me”.  I wish everyone would read her great book.I am so happy to say that the people who write the Prader-Willi Syndrome Newsletter in Australia and also in South Africa, requested my permission to put my articles in their newsletters.  I have those Newsletters in my Portfolio.   I feel so good about sharing stuff that I wrote – especially all around the world. I get lots of compliments and people say that my Portfolio is very interesting.  Maybe other people will think this is an interesting idea and start making one for themselves.  I would like to hear about what is important to them.

I am a self advocate and also I advocate for others who have PW because I believe it’s important for persons with PWs to have a Voice.  We need to be proud of accomplishments and the things they like.

Thank you


CHOICES – Name chosen for the FPWRC Newsletter

Many readers of the FPWRC newsletter may wonder why the newsletter has been given the name, CHOICES.  I mean, was it a choice to have a child with Prader-Will Syndrome?

As heartbreaking as the first diagnosis is, the choices we, as parents, make can make a world of difference to our children.  Should we actively pursue growth hormone?  Should we advocate for an aid in the classroom? Should we work with a behavior consultant to get an early handle on some very challenging behaviors?  Should we get our child’s name on the list for speech and language and occupational therapy sessions from the moment he/she is born?  Should we work towards safe housing for our PWS adult?  So many choices…..

As important as those choices are, one of the most lasting gifts parents can give their PWS child is the opportunity and encouragement to make his/her own choices.  Not only does this foster independence but having control is very important for our children. Choice can be an effective way to get results without arguments. It can be as simple as, “Would you like to wear the blue or the red shirt today?”  “Would you like cucumbers or radishes on your salad?”  “Are you going to come down the slide, or am I going to come up and help you down?”  Choices give our children decision making power instead of being told directly what to do.  It helps them with the ever present obsessive-compulsive behaviors and tenuous emotional control.  Not only will it lead to higher self esteem within our PWS child, but choices will help make living ,with the complexities of PWS, easier.


Upcoming Events

Date City Event Website
May 14 Vaughn, ON 4th Annual One SMALL Step Gala
May 15/16 Toronto, ON 2nd Annual National PWS Conference
June 4th Guelph, ON 1st Annual Choose To Believe Gala
Aug. 15th Etobicoke,ONVancouver,BCQuebec City, QCRochester, NYAtlanta, GASeattle, WAOceanview, CATexas Philadelphia 6th Annual International One SMALL Step Walk/Run

For the latest event information, please visit

2 Responses to "CHOICES"

  1. Linda Sotiriou Says:

    WOW great newsletter … lots of information Well done team. see you at the Gala/Conference/Walkathon….

    Posted on February 14th, 2010 at 8:19 am

  2. Phyllis Thompson Says:

    Loved the newsletter. Lots of great information and inspiring stories. I’m already thinking of ways to contribute. Thanks for all your hard work. See you all soon.

    Posted on February 22nd, 2010 at 9:09 pm

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