Our Journey: Milestones Along the Road to Hope
Explore the key moments that shaped PWSA | USA over the past 50 years.
1975
Foundation of the Prader-Willi Syndrome Association
“Prader-Willi Syndrome Parents and Friends,” soon to be renamed “Prader-Willi Syndrome Association,” was established by Gene and Fausta Deterling, parents of a son with PWS, with the support of Dr. Vanja Holm, of the Child Development and Retardation Center in Seattle, Washington.
1978
PWSA’s First Resources
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
First National Conference
Our first annual national conference brought together 195 attendees in Minneapolis, Minnesota. With over 195 attendees, the event laid the foundation for years of collaboration and connection.
1981
Cause of PWS Identified
Researchers identified a chromosomal deletion as the cause of many PWS cases, marking a turning point in understanding the syndrome.
1985
First Scientific Conference
The inaugural Scientific Conference underscored our commitment to advancing research.
1989
CIT Fund Established
The Crisis Intervention and Training (CIT) Fund was established, providing vital support to families in times of need.
2000
Growth Hormone Approved
Growth hormone therapy was officially approved by the FDA for PWS, transforming the standard of care for individuals with the syndrome.
2006
50th Anniversary of Prader-Willi Syndrome Discovery
50 years since Prader-Willi syndrome was first identified by Dr. Andrea Prader, Dr. Alexis Labhart, and Dr. Heinrich Willi
2021
Virtual Convention & Advocacy
We launched our Advocacy Program and hosted our first virtual National Convention, proving that even in challenging times, the PWS community thrives.
2023
Establishment of Prader-Willi Syndrome Awareness Day
U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL) filed a joint resolution declaring May 15, 2023, and every May 15th thereafter, Prader-Willi Syndrome Awareness Day in the U.S.
2024
Advocacy & New Initiatives
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.
Have a Memory to Share?
Throughout our 50 year celebration, we’d love to honor the moments that mean the most to you. Submit your memory using our form below so we can highlight it throughout the year.
Celebrate 50 Years with PWSA USA
50th Anniversary Gala: Save the Date!
Join PWSA | USA as we celebrate 50 years of support, research, and community at our Journey of Hope Gala.
Date: Friday, September 26, 2025, from 6 PM – 10 PM
Location: Ritz Carlton, St. Louis, MO
Together, we will reflect on the milestones we’ve achieved and the lives we’ve touched, all while raising crucial funds to continue our journey of hope for the next 50 years. This event will feature inspiring stories, special tributes, live entertainment, and a silent auction, all in support of PWSA | USA’s mission: Enhancing the quality of life and empowering those affected by Prader-Willi syndrome. Tickets and sponsorship opportunities coming soon—stay tuned!
50th Birthday Party Celebration
When: Friday, June 27, 2025 | 6:30 – 9:00 p.m.
Where: Arizona Grand Resort & Spa Oasis Pool
FREE TO ATTEND! VIP Cabanas can be purchased when you register for the 2025 International PWS Conference. You are invited to celebrate a milestone occasion! Join us as we commemorate the 50th birthday of PWSA | USA and the future collaborations of IPWSO, PWSA | USA, and FPWR. Together, let’s celebrate 50 years of supporting individuals and families affected by Prader-Willi syndrome, milestones achieved and memories created, and a future filled with hope, advocacy, and empowerment. Come prepared for live music, delicious food, and delightful company, as well as moments of reflection, gratitude, and celebration. Your presence will make this occasion even more special. We look forward to sharing this memorable evening with you!
50 Years
Empowering families and individuals since 1975, driving hope and progress for the PWS community.
100,000+ Families
Providing critical resources, guidance, and a supportive network to families nationwide.
$5M+ Raised
Fueling groundbreaking research, advocacy efforts, and community initiatives.
Looking Ahead
Host the 2025 International PWS Conference in partnership with IPWSO and FPWR – our first-ever collaboration of this kind, uniting the global PWS community.
Learn More
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.
Coming Soon
Collaborate with the Chicago School of Professional Psychology to teach emotional regulation skills and provide mentorship for behavior analysts.
Coming Soon
Roll out the Advocacy Ambassador Program and Parent Advocacy Training Series, empowering community members to raise awareness and advocate for change.
Coming Soon
And so much more!
Knowledge & Inspiration
Explore our curated blogs and podcasts highlighting our journey and impact.
Pioneers in PWS
From uncovering genetic causes to advancing therapies, pioneers in Prader-Willi syndrome have changed the future for countless families.
Podcasts
In honor of our 50th anniversary, we’re diving into the pivotal moments that shaped our mission and exploring what’s next for the PWS community.
Blog Posts
Our blog commemorates 50 years of advancing the PWS community’s needs. Discover heartfelt stories, cutting-edge research, and advocacy highlights as we honor the past and pave the way for the future.
PWSA Memories
Share one of your favorite PWSA | USA moments to be featured in the Pulse Newsletter, social media, and more.