As We Reflect on 2025, We Celebrate You
As we approach the end of this milestone year, we feel incredibly proud of everything the PWS community has accomplished. 2025 has been a year of both reflection and remarkable growth. None of it would have been possible without your engagement, generosity, and belief in our mission.
Highlights from a Historic Year
- We launched the Advocacy Ambassador Program, expanding PWS awareness and policy advocacy efforts across the country.
- PWS was added to the Department of Defense’s Peer-Reviewed Medical Research Program Appropriations Bill — a long-awaited advocacy victory years in the making.
- Our PWS United podcast celebrated its first anniversary on September 1, continuing to strengthen community connections through powerful stories and shared experiences.
- We co-hosted the “United in Hope” International PWS Conference, welcoming more than 1,300 families, professionals, and advocates from around the world.
- We shared in a historic moment of hope: FDA approval of VYKAT XR, the first-ever treatment for hyperphagia in Prader-Willi syndrome. This milestone represents not just scientific progress, but the collective strength, advocacy, and perseverance of our entire community.
- We commemorated our 50th year with the Journey of Hope Gala, honoring 12 extraordinary individuals who have helped shape PWSA | USA into the trusted, essential organization it is today.
- We sent more than 100 new diagnosis care packages to families newly navigating life with PWS, ensuring that no one begins this journey alone.
Looking Ahead to 2026
As we look toward the next 50 years, we are inspired by the progress behind us and the possibilities ahead. Together, we’ll continue building a future filled with connection, care, and hope.
Next year, we’ll gather for several cornerstone events, including our 3rd D.C. Fly-In (Washington, D.C., May 3-5, 2026), 2nd Residential Providers Conference (Savannah, GA, August 21-22, 2026), and 2nd Moms’ Retreat (Park City, UT, October 16-17, 2026). Alongside these gatherings, we’ll expand our family resources, advocacy initiatives, training opportunities, and research collaborations, ensuring 2026 becomes another year of progress and promise.
Join Our 2025 Angel Drive
By giving your Gift of Hope, you’ll help make these 2026 plans a reality and ensure PWSA | USA remains a lifeline for families, offering critical support services, advancing research, and amplifying advocacy and awareness efforts across the country.
Your tax-deductible gift helps provide hope 24/7/365 today, tomorrow, and for generations to come.
Thank you for walking beside us and for your steadfast commitment to the PWS community. Together, we are united in hope.
Now more than ever, your support fuels our forward motion.
We’re moving from hoping for a treatment to preparing for many therapies – targeting the full spectrum of challenges in PWS: behavior, metabolism, cognition, independence, and more. We’re expanding early diagnosis so that every child,
regardless of race, location, or resources gets support from day one. And we’re closing the gap between what exists and what’s possible. Your gift makes this real.
Imagine the power of 150 new monthly donors giving $50 or more in honor of our 50th year. That’s not just a fundraising goal – it’s a movement. One that lights the path forward for thousands.
Make Your Smartest Gift Before Year-End
There are more ways than ever to make a meaningful, tax-wise contribution:
- Qualified Charitable Distributions (QCDs): Are you 70½ or older? You can give directly from your IRA tax-free.
- Donor-Advised Funds (DAFs): Recommend a grant and amplify your impact.
- Stock Gifts: Avoid capital gains and support a cause that grows in value.
- Name PWSA | USA as a beneficiary of your retirement plan, life insurance, or investment account.
Every dollar helps families today, and brings us closer to breakthroughs tomorrow.
Supported more than 4,000 families with comprehensive PWS guidance and assistance.
PWS was added to the Department of Defense’s Peer-Reviewed Medical Research Program Appropriations Bill — a long-awaited advocacy victory years in the making.
We commemorated our 50th year with the Journey of Hope Gala, honoring 12 extraordinary individuals who have helped shape PWSA | USA into the trusted, essential organization it is today.
We co-hosted the “United in Hope” International PWS Conference, welcoming more than 1,300 families, professionals, and advocates from around the world.
Our PWS United podcast celebrated its first anniversary on September 1, continuing to strengthen community connections through powerful stories and shared experiences.
We shared in a historic moment of hope: FDA approval of VYKAT XR, the first-ever treatment for hyperphagia in Prader-Willi syndrome. This milestone represents not just scientific progress, but the collective strength, advocacy, and perseverance of our entire community.
Support PWSA | USA
From a grassroots network of families in 1975 to a national leader for PWS advocacy, care, and hope today, PWSA | USA has stood beside individuals and families every step of the way. For fifty years, we’ve turned obstacles into progress and hope into action.
PWSA | USA's Hope in Action Video Series
Last year’s Angel Drive campaign introduced Hope in Action, a powerful video series that shares real stories of resilience, hope, and community from families impacted by Prader-Willi syndrome. Each story highlights the many ways PWSA | USA is making a difference, from school success and crisis support to advocacy and beyond, illustrating the strength of our families and the heart of our mission.
Watch the first video of our new Hope in Action season, featuring members of PWSA | USA’s Adults with PWS Advisory Board. Trevor Ryan, Conor Heybach, James Towle, and Abbott Philson share what self-advocacy means to them and why advocacy work is such an important part of their lives.
WATCH: PWSA | USA's 50th Anniversary Tribute Video
Fifty years ago, parents were told to lower their expectations and prepare for the worst. They chose a different path. From that refusal to give up, PWSA | USA, a lifeline for families, was born.
Today, that lifeline still stands strong, supporting families from the moment of diagnosis through every stage of life. Whether it’s navigating infancy, school transitions, adulthood, or advanced care needs, PWSA | USA walks with families every step of the way. We provide trusted guidance, crisis support, resources, research advocacy, and hope.
We’ve built a national resource where none existed. And this year, as we celebrate 50 years of progress, we look not just at how far we’ve come, but how far we can still go.
WINTER COLORING SHEETS
Download our Winter Coloring Sheets for a fun family activity this holiday season.
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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.