The Prader-Willi Alliance of New York, Inc. (PWANY) was first incorporated as a not for profit organization in June of 1990. The PWANY was originally formed by 12 parents of children with Prader-Willi syndrome, James Bartlett, Christine Caudill, Louis Cillo, Carol Flick, Gloria Hanna, Dr. J. Henry Horbeck, Volena Howe, Beth Lynch, Harry Persanis, Henry Singer, Sheldon Tarakan and Carolyn Whitlock, who served as our first officers and directors. These parents were our pioneers following their dreams for a better future for their children and other individuals with PWS.
Soon after PWANY’s first meeting, Harry Persanis became our first President. Thanks to the tireless efforts of all of the members of the board of directors, PWANY soon began attracting members from all over NY State. In those early days doctors treated those with PWS as people who were simply obese from overeating. Because obesity was not in itself a recognized disorder, insurance companies refused to pay for any treatment. This changed when the PWANY, along with Dr. Suzanne Cassidy, petitioned the NYS OMRDD (current OPWDD) and the NYS DOH to support our recommendation to change the ICD-9CM to include PWS as a recognized disorder. This long fight for change mandated the reimbursement of medical expenses, which in turn altered the lives of those who were once diagnosed as obese, but now recognized as having PWS.
PWANY, and Linda LeTendre serving as Conference Coordinator, held its first state-wide conference in the spring of 1991. This first conference was held in Albany at the Empire State Plaza. We are still running successful annual state-wide conferences today. PWANY attracts professionals; educators, and parents throughout New York, New England, Canada and many other parts of our nation – we have even had people from Alaska attend our conferences.
PWANY has hosted a teaching day at Albany Medical Center with a Grand Rounds and a lecture on PWS. Physicians, medical students and other health care professionals learned how to diagnose PWS in infancy. This means that life-enhancing interventions will reach children and families a lot sooner. We provide them with information, support, and hope for the future.
In 2016, the PWANY hired a lobbying firm in Albany to help facilitate the re-writing of the current Mental Health and Hygiene law for eligibility to receive OPWDD services to include Prader-Willi Syndrome in the definition of a developmental disorder. Our advocacy efforts were successful and in 2017, the law was passed and PWS is now stated explicitly in the definition of a developmental disorder.
Individuals who suffer from Prader-Willi receive services from the Office of People with Developmental Disabilities (OPWDD). However many times they were initially rejected for services as the individual may have had an IQ that was slightly too high to qualify initially. However, upon appeal, or many appeals, by the individual they would then qualify for OPWDD services. Unfortunately, many individuals and their families would not appeal and therefore did not receive services. This legislation streamlined this process and made it easier for individuals with Prader-Willi to receive services.
We offer families, educators and professionals that treat and care for our children, valuable information and strategies that are proven to work so that they can help to ensure our children stay safe, happy, and healthy. Individuals born with PWS can now live longer and more productive lives than ever before. Thanks to the vision for the future held by our original board members, parents with children with PWS now have the gift of hope, support and services necessary to help raise their children successfully.
We have educated doctors and hospital staff so our children are being diagnosed much younger than ever before, usually within a few days of their birth; our babies and young children are receiving early intervention services that help to put them on the right path towards physical, cognitive, and emotional success; and we are disseminating informational packets that are invaluable to parents and educators alike, but more importantly to parents that are scared and do not know where to even begin.
PWANY works with OPWDD (Office for People With Developmental Disabilities), the Department of Health, the Department of Social Services, and the state Education Department to help arm our members with knowledge of resources that can only help our children and their families to experience a better quality of life than they ever could in the past.
PWANY is still a parent-run organization and, with the exception of the executive director, is all volunteer.
