Contributed by PWSA | USA’s CEO Stacy Ward, MS, BCBA
Dear PWS Community,
As we close out another meaningful year – a milestone year – I want to speak directly to you: our families, donors, partners, and advocates. Thank you. Your generosity, belief in our mission, and dedication to the Prader-Willi syndrome (PWS) community are the heart of everything we do.
This year, we celebrated 50 years of PWSA | USA. What began as a small, parent-led effort has grown into a national network of support. One built on a powerful foundation of families refusing to walk this journey alone and doing everything they can to help their loved ones with PWS thrive.
That same spirit still guides us today.
Because of you, 2024 was a year of growth, innovation, and strengthened commitment. We expanded family support, enhanced clinical and crisis services, grew our advocacy and education efforts, and continued advancing critical research.
Newly diagnosed families had someone to call. Caregivers in crisis received expert guidance. And children and adults with PWS were better understood and supported in their homes, schools, and communities.
Thank you for helping make all of this possible.
Important Milestones in 2025
In 2025, our Family Support services ensured parents, caregivers, and individuals with PWS had compassionate guidance at every stage – from diagnosis through adulthood and beyond. Our team provided support, resources, and so much more for thousands of families and individuals not just across the country but around the world.
Our 24-Hour Crisis Phone Line (941-312-0400) and Medical Support Services remained a lifeline during emergencies, offering clinician-to-clinician consultation, behavioral and emotional support, safety planning, and critical intervention when families needed it most. These are often unseen but truly life-changing moments.
We also continued to ensure that no family begins this journey alone – sending more than 100 New Diagnosis Care Packages to families newly navigating life with PWS, offering comfort, resources, and connection from the very start.
Our Education and Training programs continued to grow as well, equipping schools, caregivers, residential providers, and clinicians with the tools they need to support individuals with PWS safely and effectively. Strong communities begin with informed, empowered people, and your support made that possible.
We made powerful strides in advocacy and public policy. At the state level, we worked tirelessly to ensure Prader-Willi syndrome is recognized as an eligible diagnosis for waiver services, opening access to critical supports individuals with PWS need and deserve. We also launched our new Advocacy Ambassador Program, expanding PWS awareness and policy advocacy efforts across the country through the voices of our community.
And after years of hard work, we achieved a long-awaited victory with the inclusion of Prader-Willi syndrome in the Department of Defense’s Peer-Reviewed Medical Research Program House Appropriations Bill – a powerful milestone that, if passed by the Senate, will help advance PWS research for years to come.
This year also marked a truly historic moment of hope with the FDA approval of VYKAT XR, the first-ever treatment for hyperphagia in Prader-Willi syndrome. This breakthrough represents not only scientific progress, but the collective strength and perseverance of our entire community – families, clinicians, researchers, advocates, and supporters working together toward meaningful change.
This was also a landmark year for research and scientific advancement. Through our support of the Global PWS Registry, natural history studies, collaborations with industry partners, and continued investment in research initiatives and ongoing clinical trials, your generosity helped accelerate progress toward new treatments and improved clinical understanding. Breakthroughs that once felt distant now feel closer than ever.
We also strengthened connection and storytelling across the PWS community through powerful shared experiences. Our PWS United podcast celebrated its first anniversary on September 1st, continuing to elevate voices, share stories, and bring our community closer together.
We commemorated our 50th anniversary in a truly special way at our Journey of Hope Gala, where we honored 12 extraordinary individuals who helped shape PWSA | USA into the trusted, essential organization it is today. It was a powerful reminder that our history is built on the dedication and love of so many.
This year, we were honored to co-host the “United in Hope” International PWS Conference, alongside IPWSO and FPWR. The conference saw a record-breaking 1,330 families, professionals, and advocates from around the world. The energy, education, connection, and inspiration that filled the Arizona Grand Resort and Spa that week will stay with us for years to come.
I’m also proud to share that during the conference, PWSA | USA’s Adults with PWS Advisory Board hosted its first-ever Adults with PWS Conference, where nearly 60 individuals living with PWS came together to learn from one another and build lasting connections.
And across the country, we saw incredible momentum through our PWS Hope United peer-to-peer fundraising events, including the successful launch of the United We Brunch campaign throughout May (PWS Awareness Month). These community-led efforts were nothing short of inspiring – driven by volunteers hosting events for the first time, and others for their 2nd, 10th, even 16th year.
In total, Hope United fundraising events raised nearly $700,000 in 2025 to support PWSA | USA’s critical services. We are deeply grateful to every individual who gave their time, energy, and heart to make these events possible.
Beyond programs, policies, and progress, what your support truly provides is hope.
Hope for newly diagnosed families feeling overwhelmed.
Hope for adults with PWS seeking independence.
Hope for caregivers who need to know they’re not alone.
Hope for a future shaped by understanding, compassion, and progress.
As we celebrate 50 years of PWSA | USA, your impact is unmistakable. From our early beginnings to a national network of care, advocacy, and guidance, you have helped build the foundation families rely on every day.
Looking ahead, there is still work to do—but we are stronger and better prepared because of you. Your generosity, your voice, and your belief in this community continue to move us forward.
As our Angel Drive campaign continues through December 31st, we invite you to consider a year-end gift. Your support ensures that when a family reaches out, whether for a new diagnosis, a crisis, or guidance, we are ready to answer.
From all of us at PWSA | USA, thank you for walking with us. We wish you and your loved ones a peaceful holiday season and a hopeful New Year.
Warmly,
Stacy Ward, MS, BCBA
PWSA | USA CEO
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.