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PRADER-WILLI SYNDROME is a birth defect first identified in 1956 by Swiss doctors A. Prader, H. Willi and A Labhart. There are no known reasons for the genetic accident that causes this lifelong condition which affects appetite, growth, metabolism and behavior. Those affected by the syndrome - about one in 12,000 - are very much alike in their physical symptoms, behaviors and other characteristics. Both sexes and all races are affected. The Prader Willi Syndrome Association provides a resource for education and information about Prader-Willi and support for families, professionals and other interested citizens.


SPRING MEETING

New Jersey Chapter of the Prader-Willi Syndrome Association

Sunday, June 1, 2008      1:00 to 4:30PM 

St. Joseph’s Regional Medical Center

703 Main Street

Paterson, NJ 07503

973-754-2727 

GUEST SPEAKER:  Jennifer Zarcone, Ph.D.

Associate Professor of Pediatrics, University of Rochester Medical School 

Understanding How the PWS Brain Works 

People who know Prader-Willi Syndrome the best describe it as more of a brain disorder than an eating disorder.  Dr. Zarcone and her colleagues in the University of Rochester, the University of Kansas and Vanderbilt University have spent the last several years using a technique called functional MRI to study the brains of “normal” people and those with Prader-Willi Syndrome.  Dr. Zarcone will share what they have learned and how it affects our understanding of PWS. 

If you are planning to attend, please contact Marge Royle (973-628-6945 or email at tayloroyle@optonline.net) or Sybil Cohen (856-795-4229 or email at pwsa.nj@gmail.com).   

-------------------------------------------- Child Care ------------------------------------------------

We encourage you to arrange for child care in or near your home, and the Chapter will reimburse you at the meeting for hiring someone to provide child care.  However, if you prefer to bring your children, child care will be provided in the Genetics Suite, which is located on the 2nd floor of 100 Hospital Plaza.  This is an office building on the left hand side of the emergency room parking lot. It is right next to the auditorium where the PWSA event will be held. Use the door on the right and take the elevator to the 2nd floor. The Genetics Suite is to the left.  If you are planning to bring children with you, please pre-register by contacting Marge or Sybil so that we have enough helpers.

 

 

-----------------------------------------Meeting Location----------------------------------------

The event will be held in the Johnson Auditorium at St. Joseph’s Regional Medical Center. The entrance to the auditorium is within the Emergency Room parking lot located here at the Center. St. Joseph’s Regional Medical Center is located at 703 Main Street, Paterson, NJ. With the hospital on the right hand side, make a right onto Hospital Plaza/ Mary Street. Go into the Emergency Room entrance on Hospital Plaza/ Mary Street. 

--------------------------------------------- Parking -----------------------------------------------

 

Parking for the PWSA event has been reserved in the Harbor House Parking lot at 645 Main Street. Parking is available for handicapped individuals and families with small children at 100 Hospital Plaza, right next to the auditorium and childcare.

 

--- DIRECTIONS TO ST. JOSEPH’S REGIONAL MEDICAL CENTER --- 

FROM NEW YORK CITY: GW Bridge to Rt. 80 West. Take Exit 58A (Madison Avenue, Clifton) onto Madison Ave. At the 2nd light make a right onto Main Street. At Mary Street/Hospital Plaza, make a right turn to the emergency room parking lot (see map) 

FROM THE SOUTH: NJ Turnpike to Garden State Parkway North to Exit 155P (on left) onto Rte. 19. Take the first exit, and turn right onto Broad Street. Go through one light, and bear left just after passing under the railroad trestle. Turn right at the light onto Levine Street. At the stop sign, make a left onto Main Street. St. Joseph's will be on your right. 

FROM THE EAST (Jersey City area) Take US 1&9 North to Route 3 West. Merge onto Garden State Parkway North. Keep Left to take NJ-19 N via exit 155P toward Paterson. Then follow from above.  

FROM THE NORTH:  Garden State Parkway South to Route 80 West.  Then proceed as above from New York City. 

FROM THE WEST: Rt. 80 East to Exit 58A, (Madison Avenue, Clifton) to Madison Avenue.  Proceed as above, from New York City.


Our Mission

The Prader-Willi Syndrome Association, NJ Chapter is formed to provide support to parents and individuals with Prader-Willi Syndrome.
We strive to help educate both educators and the medical field on the needs of people with PWS.
We hold two meetings a year with featured speakers on Prader-Willi Syndrome and related areas.
We try to be involved politically for persons with PWS and to assist in their life's planning.
We are part of the Prader-Willi Syndrome Association USA which provides us with educational materials and coordinates research on PWS.


Below are some pictures from our last meeting:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Contact Information

The Prader-Willi Syndrome Association - New Jersey Chapter

President Sybil Cohen - Questions on a young person with PWS or general information contact Sybil.  Her phone number and email (general information) are listed below.

Executive Directors:  Marjorie Royle & Douglas Taylor - contact for general information adults with PWS and state wide services.
Use the Webmaster's email for them or call 973-628-6945

Telephone
856-795-4229
Postal address
514 Gatewood Road, Cherry Hill, NJ 08003
Electronic mail
General Information: pwsa.nj@gmail.com
Webmaster: maaemba@bellatlantic.net

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Disclaimer:

The NJ Chapter -PWSA web site is intended to provide information only - not to diagnose or advocate particular treatment options. Individuals should only make decisions about treatment options and diagnoses in close collaboration with their own health care team of professionals.

The inclusion of any resource or link in the PWSA-NJ Web Site does not imply endorsement.

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