Imagine feeling constantly hungry.
People with Prader-Willi Syndrome (PWS) have a genetic disorder that causes a permanent hunger for food. This syndrome is a lifetime condition that afflicts one person in 15,000. The diagnosis of PWS is often overlooked by medical professionals.

Keep up to date by attending our Annual General Meeting June 11 in Airdrie. Hear guest speaker Terry James PWS author from B.C. Read below about the One Small Step challenge and Dr. Haqq's new research study. Click here for last season's newsletter.
Need to renew your membership or want to join us? Click here for the form.
Interested in participating in a web-based training course for anyone working with PWS? Click on this brochure or go to www.pwsnetwork.ca for registration information.
Participate in Calgary's second "One Small Step Walk" to raise money for PWS research. All funds raised go to the Foundation for Prader Willi Research (FPWR) Canada.

WHAT: One Small Step Walk - 2 km (not too long for the kids!)
DATE: Sunday, August 21, 2011
TIME: Check-in @ 10:30 am, Walk @ 11:00 am
LOCATION: Edworthy Park
Click here and here for information

Foundation for Prader-Willi Research

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burden of PWS, allowing them to lead full and independent lives.

Click here for information

Alberta's own Dr. Haqq is spearheading PWS research. Please consider participating in the following. Details for recruitment can be found here and in the attachments.
Researchers in the Division of Pediatric Endocrinology at the University of Alberta are currently conducting three studies in children with Prader-Willi Syndrome:
  1. investigating the relationship between body weight, location of body fat, nervous system function and hormones
  2. cognitive function
  3. the relationship between food intake and hormone levels in children/adolescents with Prader-Willi Syndrome.
"NEW RESEARCH--This study is a medical chart review, so there are no study visits; interested parents just need to contact me. Currently the study is open to children/adolescents (0-17 years of age) with PWS living in Alberta. However, in the future we plan to expand Canada-wide and to adults with PWS."

Click here for a Roadmap to Aid You Along the PWS Journey (0-36 months of age).

Characteristics of people with PWS are:

  • weight gain on as little as 800 calories a day
  • intellectual impairment
  • short stature
  • obsessive behaviors - like skin picking
  • excessive daytime sleepiness
  • extreme stubbornness
  • incomplete sexual development
  • babies with PWS are weak, sleepy and don't cry or eat well.

Despite these problems, people with PWS can learn and accomplish many things. They are very loving and sociable, show great interest in games, puzzles, reading and artistic endeavors. With the help of understanding caregivers, people with PWS can enjoy happy fulfilled lives.

One of the most important breakthroughs in PWS research is DNA testing. Diagnosis is now possible soon after birth, giving families control of weight management before obesity sets in. Early diagnosis helps parents get appropriate medical and educational interventions for their child.

One of the major problems facing this group, is the inability to live independently in adulthood.

People with PWS are incapable of managing their food intake. Without stringent controls far more serious, even fatal conditions, can occur.

Specialized housing facilities with isolated food services are required.

Caseworkers and other staff need special skills, understanding, and a general acceptance of the humanity of the person with PWS.

  • To increase awareness and knowledge about PWS
  • To provide lifetime advocacy for affected individuals
  • To provide better quality of life for children and their families
  • To raise money to construct Specialized Housing

Through the teamwork of families and caregivers, The Prader-Willi Syndrome Association of Alberta will work towards improving and enhancing the lives of those with Prader-Willi Syndrome.

PWS is commonly underdiagnosed because of individual variations in symptoms.

PWS is a genetic disorder that causes a permanent hunger for food. It is a lifetime condition that afflicts one person in 15,000.

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