As the calendar turns to 2025, we at Prader-Willi Syndrome Association | USA (PWSA | USA) are filled with gratitude and anticipation. This year marks a monumental milestone: 50 years of supporting individuals with Prader-Willi syndrome (PWS) and their families through advocacy, education, research opportunities, and compassion.
Our story began in 1975, when Gene and Fausta Deterling, with the guidance of Dr. Vanja Holm, founded what would become PWSA | USA. What started as a group of parents and friends has grown into a national movement uniting families, professionals, and advocates across the country.
Looking Back on Our Journey
Over the past five decades, we’ve achieved countless milestones that have shaped the PWS community and expanded the resources available to individuals and families. Here are just a few highlights from our history:
1978: The release of Prader-Willi Syndrome, A Handbook for Parents, provided families with a critical resource, alongside our now-iconic newsletter, The Gathered View.
1979: Our first annual national conference brought together families, professionals, and individuals with PWS, laying the foundation for years of collaboration and connection.
1981: Researchers identified a chromosomal deletion as the cause of many PWS cases, marking a turning point in understanding the syndrome.
1985: The inaugural Scientific Conference underscored our commitment to advancing research.
1989: The Crisis Intervention and Training (CIT) Fund was established, providing vital support to families in times of need.
2000: Growth hormone therapy was officially approved by the FDA for PWS, transforming the standard of care for individuals with the syndrome.
2021: We launched our Advocacy Program and hosted our first virtual National Convention, proving that even in challenging times, the PWS community thrives.
2024: PWSA | USA focused on amplifying community voices through initiatives like our 150-person D.C. Fly-In advocacy event, the inaugural Residential Providers Conference, and the launch of our podcast, PWS United. These efforts created new opportunities for connection and advocacy within the PWS community.
Celebrating the Future: The Journey of Hope Gala
This September, we invite you to join us for the 50th Anniversary Celebration Gala: The Journey of Hope on Friday, September 26, 2025, at the Ritz-Carlton in St. Louis, Missouri. This special evening will honor the incredible progress we’ve made together while celebrating the people who have shaped our journey over the past five decades. Stay tuned for registration and sponsorship opportunities coming soon!
A Year of New Beginnings
While we honor our rich history, we’re equally excited to embrace the future. In 2025, PWSA | USA will:
- – Host the 2025 International PWS Conference in partnership with IPWSO and FPWR – our first-ever collaboration of this kind, uniting the global PWS community.
- – Launch the Parent Training Series, Empowering Families in IEP Meetings, led by Dr. Destiny Pacha, ED.D., equipping families to confidently advocate for their children.
- – Collaborate with the Chicago School of Professional Psychology to teach emotional regulation skills and provide mentorship for behavior analysts.
- – Roll out the Advocacy Ambassador Program and Parent Advocacy Training Series, empowering community members to raise awareness and advocate for change.
These are just a few examples of how we’re committed to expanding our programs and services in 2025, all with one goal: to empower individuals and families affected by PWS.
Join Us on This Journey
As we celebrate this momentous anniversary, we remain deeply grateful to the countless families, professionals, and supporters who have stood with us over the years. Together, we’ve built a legacy of hope and resilience, and we know the best is yet to come.
Here’s to 50 years of making a difference, and to the many milestones yet to be reached. Let’s make 2025 a year to remember.
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.