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.
- Golf for PWS – May 16, 2016 – Willow Creek Golf & Country Club, Mt. Sinai, NY. Click here for details
- 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 firstname.lastname@example.org 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.
- Summer 2015 Newsletter is in the mail! To view the newsletter online, click here
- Join PWANY’s Fundraising – Charity Bib Program – Boilermaker road race! You can donate and/or participate. Click here for more details.
- Understanding Supplemental Security Income (SSI) – New information for PWS. Click on Resources above.
- PWANY, Inc. Board of Directors is pleased to announce that on Monday, October 21, Catholic Charities Disabilities Services opened their fifth residence specific to the needs of individuals with PWS. The residence is home to two men with genetic Prader-Willi Syndrome and one with behavioral issues around food that requires the same level of care and environmental modifications. The home is located in Rotterdam, a suburb of Schenectady, about 15 minutes west of Albany.
A few years ago the PWANY Board advocated heartily on behalf of a family by assisting them on behalf of their son who was having challenges in a non-PWS specific home. The opening of this residence was due in part to that strong advocacy. New residential development is a rarity in the current OPWDD fiscal climate, this was quite a coup on the part of all of us. Thanks again for all your support and assistance in making this happen!
- 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
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.