August is National Make-A-Will Month—an invitation to reflect on your values, protect your loved ones, and leave a lasting impact. And in 2025, that invitation is uniquely meaningful.
This year, PWSA | USA celebrates its 50th anniversary. What began in 1975 with a group of determined families gathered around a kitchen table in Washington state has grown into a national organization that empowers, supports, and uplifts the entire Prader-Willi syndrome community. Among them was Gene Deterling, who sparked it all by asking a now-legendary question:
“Can’t we do something?”
That question launched a movement. Today, that movement thrives because of every parent, professional, researcher, and ally who has answered with a resounding yes—including people like Dr. Vanja Holm, whose early dedication helped lay the foundation for decades of progress.
🕰️ Honoring 50 Years of Impact—and Building What Comes Next
As we mark this historic milestone, we’re not simply looking back. We’re preparing for the next 50 years—stronger, smarter, and more united than ever.
Over the past five decades, PWSA | USA has:
- -Delivered lifesaving family support—guiding individuals and families through diagnosis, crisis, care transitions, and long-term planning.
- -Advocated for policy in Washington—protecting access to Medicaid, education, disability supports, and rare disease research funding.
- -Built community-driven leadership, including the Adults with PWS Advisory Board, Family & Professional Advisory Boards, and our Advocacy Ambassadors—ensuring individuals with PWS have a voice at every level.
- -Prioritized high-impact research—supporting translational projects with the strongest potential to move from lab to clinic. We focused our funding on research that could fast-track meaningful treatments and real-world applications for those living with PWS.
This work was never easy. But it was always driven by people who said yes when others said wait—people like you.
🌟 Why 2025 Is the Moment to Act
Fifty years in, we’re not slowing down—we’re scaling up. And now is the time to ask yourself:
What legacy do I want to leave for the future of the PWS community?
By including PWSA | USA in your will or estate plans, you help ensure:
- -The next generation of families receives the support they need—exactly when they need it.
- -Research into treatments and therapies continues to move forward.
- -Policy protections stay strong, and our national voice grows louder.
Legacy giving isn’t about the size of your estate—it’s about your vision for a future where people with PWS live longer, healthier, and more empowered lives.
📝 Your Will, Your Voice, Your Legacy
A legacy gift to PWSA | USA:
- -Extends your impact beyond your lifetime.
- -Supports life-changing programs and research.
- -Honors the mission that began 50 years ago—and helps carry it into the next 50.
✅ How to Take Action
- *Create or update your will. It’s never too early—or too late—to start.
- *Designate PWSA | USA as a beneficiary. You can leave a specific amount, percentage, or remainder of your estate.
- *Let us know. We would be honored to recognize your gift and share how it supports our future work.
🎉 “Can’t We Do Something?” Yes—And We Are
Because of Gene Deterling and Dr. Vanja Holm. Because of families who never stopped fighting. Because of people like you.
Together, we’ve built a legacy of compassion, advocacy, and progress. And together, we can shape a future filled with hope, breakthroughs, and lives well lived.
Visit PWSA | USA’s 50th Anniversary page to see our story—and be part of what comes next.
Learn more about Planned Giving at Planned Giving | PWSA USA
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.
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.
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.
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.
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.