contributed by Stacy Ward, PWSA | USA CEO
On October 18, we gathered in the Malt Room at Brown’s Brewing Company in Troy, NY for an unforgettable evening: Cocktails for a Cause: A Night for Prader-Willi Syndrome. It was a night filled with music, laughter, and a few heartfelt tears — but most importantly, it was a night that made a real difference for families impacted by Prader-Willi syndrome (PWS).
For the very first time, my family and friends came together with my PWS family and friends under one roof. To see my two worlds unite — to celebrate, to support, and bond is something I will cherish forever.
This evening wouldn’t have been possible without the generous support of our sponsors: Soleno Therapeutics, Acadia Pharmaceuticals, Amazing Drone Shows, the Papaioannou Family, Denooyer Chevrolet, and Catholic Charities Disabilities Services. Their belief in this cause helped bring my vision to life, and I am deeply grateful.
The evening was made even more impactful by the voices of those who took the stage. Jason Moses, Area Business Director at Soleno Therapeutics, shared powerful words about Soleno’s commitment to the PWS community and the hope that ongoing research brings to families.
We also had the honor of hearing from Willow Baer, Commissioner of the NYS Office for People with Developmental Disabilities (OPWDD). Commissioner Baer spoke not only from her role as a leader in the disability field but also from the heart, sharing her personal connection as the sister-in-law of a 50-year-old woman living with PWS. She emphasized the importance of advocacy, inclusion, and collaboration to ensure that individuals with developmental disabilities are supported at every stage of life.
Perhaps the most moving moment of the night came from Noelle McDougall, a 21-year-old living with PWS. Noelle courageously shared what it’s like to live with the relentless challenge of hyperphagia, helping everyone in the room better understand the daily realities of this syndrome. Her voice reminded us why this fight is so urgent — and why nights like this matter so deeply.
Perhaps the most moving moment of the night came from Noelle McDougall, a 21-year-old living with PWS. Noelle courageously shared what it’s like to live with the relentless challenge of hyperphagia, helping everyone in the room better understand the daily realities of this syndrome. Her voice reminded us why this fight is so urgent — and why nights like this matter so deeply.
While the cocktails, raffles, and dancing made for a lively and fun evening, Cocktails for a Cause was about so much more. Together, we raised critical funds to support the mission of PWSA | USA, ensuring that families remain at the forefront of rare disease policy conversations at both the state and federal level, have the resources and support they need to help their loved ones live safer, fuller, and more meaningful lives, and that research continues until there is a treatment or approach for every single symptom of PWS.
“What a wonderful evening of awareness and fundraising! There is something special about the atmosphere when supporters of the PWS community come together, reflective of a combined sense of camaraderie, shared purpose, and hope. The venue was relaxed, the raffles plentiful, and the speakers were inspiring. How incredible to see advocates from the state and national levels, as well as sponsors and state officials, all mingling and coming together to champion those with PWS. My first thought as we left for the evening was that it had been a great night, closely followed by considering how to host a similar event in my area. Much gratitude to Stacy and her family for planning such an incredible event!”
— Amy McDougall, PWS parent
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.