Welcome to the Prader-Willi Syndrome Association of New England

A Support for Families, Providers and Individuals

What is Prader Willi-Syndrome?

PWS is a non-inherited genetic disorder which is most often associated with a random deletion of the 15th chromosome. It is estimated that PWS occurs in 1 in 10,000 births. It affects both sexes and is unrelated to race. The cause is, as yet, unknown.   


Next Chapter Meeting
 
February 28th, 1pm-3pm

Franciscan Children's Hospital, Chamberlin Conference Room
The PWS-NE board invites you to join in viewing the documentary by Dan Habib, "Including Samuel," which explores the importance and benefits of inclusion for children with varying disabilities. Where many of us have children at different ages and stages in school, viewing this story together and sharing our unique perspectives will allow for much discussion. Look forward to seeing you! This get together is in lieu of a quarterly meeting.Look forward to seeing you!

Please RSVP to Eileen Rullo, sunsetrock@comcast.net

PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is circa 70, but even those with normal IQs almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.

PWSA-New England Chapter was formed in 1983 to support families, providers and individuals with Prader-Willi Syndrome.

Please click here to download the membership form.

Please click here to download the instructions for Funding Requests.

There are more than 200 members from the following states:

  • Massachusetts
  • Rhode Island
  • New Hampshire
  • Maine
  • Vermont

Click here to see PWSA New England events and monthly meetings.

Help Spread the word about Prader-Willi in your area. Click here for more information and to donate to find a cure!

Disclaimer: The inclusion of any resource or link in the PWSA New England Web Site does not imply endorsement.

Counter