When Winter Storm Fern stranded the PWSA | USA team in Dallas, Texas, at the conclusion of our staff retreat, flights were grounded and travel home became impossible. But instead of letting unexpected circumstances slow us down, that moment sparked an idea – one rooted in the reality our community lives every day.
Families and individuals living with Prader-Willi syndrome (PWS) do not get a pause when life becomes difficult. There is no break in the storm from the daily, lifelong challenges of this rare genetic disorder. We became inspired us to turn a frustrating situation into meaningful action.
In the midst of freezing temperatures and negative wind chill, our team decided to do something bold. We created the Plunge for PWS Challenge, and our CEO, Stacy Ward, kicked it off by jumping into an icy hotel pool (video below!).
It wasn’t just about braving the cold. It was a symbolic act of solidarity with the individuals and families we serve – families who face extraordinary challenges every single day with courage, resilience, and determination.
The Plunge for PWS is more than a moment, it’s a movement. It’s a reminder that while we may experience temporary discomfort, families affected by PWS navigate lifelong challenges without the option to hit pause.
This challenge is our way of saying: we see you, we stand with you, and we’re committed to turning awareness into action.
How the Challenge Works
The Plunge for PWS Challenge is designed so anyone, anywhere can participate.
You can take the plunge from anywhere in the world, in any climate, and in any body of water, whether that’s a pool, lake, ocean, or something else. It’s not about how cold the water is. It’s about showing up for the PWS community.
If you’re tagged or called out to participate, you have two options:
Take the plunge yourself and challenge others in your community (friends, family members, coworkers, etc.) to do the same.
Or make a donation to this website to support PWSA | USA and the individuals and families living with PWS.
Either way, you’re helping raise critical funds and awareness for the PWS community.
We invite you to stand with us. Step outside your comfort zone. Turn compassion into impact. And help us show families living with PWS that they are not alone.
PWS is the reason. Now is the time.
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.