What is Prader Willi-Syndrome?


Friends with PWS in the New England area gather for the first annual PWSA New England walkathon!

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.

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.

PWS New England Prader-Willi Syndrome 2013 Conference

PWSA New England along with Latham Centers and Advocates, will hold a conference in Brewster Ma. on September 20- 21.

Click Here to View Conference Schedule

Please join us to learn from a vibrant and diverse group of professionals and caregivers on Best PWS Practices, including research and proven methods in the successful treatment and care of children and adults with PWS.

A limited number of rooms are reserved at Ocean Edge at preferred PWS Conference Rate of $199 per night. Many other lodging options are available within a 20-minute radius of Brewster, MA. We recommend you search online for accommodations that best suit your needs and budget.


MEMBERS Contact Eileen Rullo BEFORE registering rullo.eileen@gmail.com

Friday, September 20 only: $75 per person
Saturday, September 21 only: $100 per person
September 20 & 21: $150 per person