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. Registration for the 2019 conference requires active membership.
Please join us!
Use the Buy Now button below to make your secure online payment.
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 twenty 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, Nina Roberto is an invaluable resource to the PWS community.
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 Nina has also, in just the past year, organized five family run Focus Groups throughout NYS. Each Focus Group is helping to provide information and support to families as they struggle to meet the challenges of PWS.
Resource Identification, Referral & Development – We continue to identify resources local to families and refers them to those resources. We work with agencies and organizations to develop resources for people and families affected by PWS.
Advocacy: 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 fifteen years ago established a Committee which meets regularly with the Commissioner and senior leadership of the OMRDD to address and resolve issues that are important to our membership. To further accomplish this goal our Executive Director, Nina Roberto has held meetings in Albany, and in many other places throughout NYS.
Education: 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. We provide an information network through our List-Serve, PWS-NY@yahoogroups.com and through our website, www.prader-willi.org where thousands, just like you, have gone for information and advice.
Research: Our board member, Dr. Jamie Bassel, on behalf of the PWANY and those with PWS, has worked diligently to establish a PWS research position at the Genetics Department of Mt. Sinai Hospital. This was finally accomplished with the appointment of Andrew Sharp, PhD who has done research in Epigenetics at the University of Geneva in Switzerland and at the University of Washington in Seattle, Washington.
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!