Welcome

Mission

Join us in our mission!

We want all people with Prader-Willi Syndrome living in New York state to have the hope and support they require through the advocacy of the Prader-Willi Alliance of New York, Inc. (PWANY).  Click on the Membership link above.

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PRADER-WILLI ALLIANCE 27TH CONFERENCE APRIL 28TH & 29TH, 2017 – FRIDAY & SATURDAY
THE DESMOND HOTEL IN ALBANY, NY

“The Desmond Hotel was wonderful!  The conference food, the rooms, the speakers all were amazing!  We will plan to be there next year too!  Thank you!”
a conference attendee

Do you have a recommendation for topics and/or speakers?  If so, email Barb at alliance@prader-willi.org

Please go to the CONFERENCE section for more information and see pictures from our last conference!

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Jay

Jay Elgarten’s Inaugural Golf for PWS was held on May 16, 2016 at The Willow Creek Golf & Country Club, Mt. Sinai, NY.  Click here for pictures

 

 

 

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Highlights

  • Spring 2016 Newsletter is in the mail!  To view the newsletter online, click here
  • PWANY is sad to report Harry Persanis died February 13, 2016.  More information click here.
  • Siblings Needed: If you are 18 years old or older, have a brother or sister with Prader-Willi Syndrome that is at least 5 years old, and have lived in the same home as your sibling with PWS for at least one year, your participation in this study would be greatly appreciated. Participants of this study will receive a $20 Amazon gift card to kindly thank you for your time and efforts. Some questions in the interview may bring up some situations that may be difficult for you. You do not need to answer any questions that make you feel uneasy. If you do wish to participate in this study or have further questions, please contact Elana Wishnefsky at eew36@case.edu or (872) 251-1015. Once you have expressed interest in participation, a letter of informed consent will be mailed to you as well as a letter asking when is best to reach you for the interview.
  • Help us put together a list of doctors across New York State who effectively work with our loved ones who have Prader-Willi Syndrome. If you are happy with the care your child receives from various specialists, please include these doctors’ names and locations in the survey below. If readily available, you may include your doctors’ specific contact information, as well (not required). This information will potentially help other families who are looking for medical care for their loved ones. Click here to do the survey.
  • Understanding Supplemental Security Income (SSI) – New information for PWS. Click on Resources above.
  • We’re going Green!  Please click on the link above to add your name to our mailing list.  Once registered you will begin to receive our newsletter via email.  Stay connected and informed!

We have a new mailing address!
Prader-Willi Alliance of NY, Inc.
244 5th Avenue, Suite D-110
New York, NY  10001

 

Blogging

We welcome your comments, insights and concerns on the pages of our website.  You can also share your thoughts and discuss issues on our blog page.  See the link above.

 

Prader-Willi Alliance of New York, Inc.

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