Prader-Willi Alliance of NY, Inc. welcomes you as a member. Your membership strengthens our organization so we can join together to advocate for people with Prader-Willi syndrome. Our members participate in educational conferences and local support groups. They can participate in fundraising and are eligible to vote at our annual membership meeting. Our member’s suggestions and concerns will enhance our ability to improve the lives of people in NY with PWS.
Please join us!
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Enter in the box either: Family or Professional Membership. Family membership is $30 a year and Professional membership is $40 a year.
Downloadable PDF Applications for Mailing
What do I get as a member of the Prader-Willi Alliance of New York, Inc. (PWANY)?
The PWANY has come a long way since it’s founding thirty years ago. From a membership that you could count on all your fingers to an organization of Officers and a Board of Directors that, like the growing membership it represents, reaches every corner of NYS and includes families of individuals with PWS of all ages.
As part of our growth as an organization, we were able to establish the position of Executive Director. As our Executive Director, Rachel Johnson addresses the administrative needs of the organization and plays an integral role in accomplishing much of the work of PWANY. We are also fortunate to have a Family Support Services grant, with Nina Roberto employed by Catholic Charities to meet the goals of that grant.
In addition to the newsletter which is published quarterly and one of the premier annual state conferences in the nation, your dues help to support the work of PWANY, which is described in part below.
Statewide Crisis Intervention & Support– We are available to any family member in NYS to help resolve health, behavioral/crisis and educational issues, just to name a few. To further this effort, Focus Groups are available at several sites throughout the state to help provide information and support to families as they struggle to meet the challenges of PWS. The most established of these groups is organized by Family Support Services Coordinator Nina Roberto and is based at Winthrop on Long Island.
Resource Identification, Referral & Development – We continue to identify resources local to families and refer them to those resources. We work with agencies and organizations to develop resources for people and families affected by PWS.
Advocacy at Local & State Levels – We provide advocacy to assist families not only with local agencies, organizations and governments, but also at the state and national level in an effort to change inappropriate policies that adversely affect the lives of people with PWS. To accomplish this, PWANY some twenty-five years ago established a Committee which meets regularly with the Commissioner and senior leadership of the OPWDD to address and resolve issues that are important to our membership. As a result of this collaboration, in December 2015, OPWDD issued specific guidance to its providers in a "best practice" document titled "Support and Supervision of Individuals with Prader-Willi Syndrome". Another hallmark achievement was the inclusion of Prader-Willi Syndrome into the definition of a developmental disability under mental hygiene law in July 2017, facilitating eligibility for needed support through OPWDD.
Education for Families & Professionals – PWANY works to ensure that families and professionals receive information and training on PWS, everything from medical to educational to social and to life planning. In addition to our annual conference, we provide an information network through email, social media (such as Facebook) and through our website (www.prader-willi.org) where thousands, just like you, have gone for information and advice. We have worked in collaboration with PWSA(USA) to provide webinars on relevant topics and are looking to expand these offerings.
Research: We strive to share out information on current research studies to promote opportunities and enrollment for our families. Historically, one of our board members, Dr. Jamie Bassel, on behalf of the PWANY and those with PWS, worked diligently to establish a PWS research position at the Genetics Department of Mt. Sinai Hospital.
None of this critical work can be done without your financial support. Working together we have made, and can continue to make, a real difference for the betterment of our children’s lives.
Join the Alliance and help support our work for individuals with Prader-Willi syndrome throughout our state of New York!