Upcoming events :
Celebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year
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
While we honor our rich history, we’re equally excited to embrace the future. In 2025, PWSA | USA will:
1. 50th Anniversary Celebration in Seattle: where it all began. Time and place TBD.
2. Smaller “Pop-Up” celebrations will be planned around the Northwest.
3. Launch of PWS Link: the first mapping ap to help families find each other and
professionals who specialize in the Syndrome
4. 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.
5. Host the 2025 International PWS Conference June 23-28 at in partnership with
IPWSO and FPWR – our first-ever collaboration of this kind, uniting the global PWS
community.
6. 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.
7. Collaborate with the Chicago School of Professional Psychology to teach emotional
regulation skills and provide mentorship for behavior analysts.
8. 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. Contact us if you
would like more information about these exciting events or how we can collaborate in the future.
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