On Friday, September 26, 2025, nearly 200 members of the Prader-Willi syndrome community gathered from across the country at The Ritz-Carlton, St. Louis to celebrate a milestone half a century in the making. Our 50th Anniversary Journey of Hope Gala was nothing short of extraordinary. It was a night filled with connection, laughter, legacy, and of course, plenty of dancing.
The Ritz-Carlton proved to be the perfect setting for this historic evening. Elegant and welcoming, with staff who went above and beyond to make every detail shine, the venue matched the significance of the occasion. One new parent later shared with our staff just how much the evening meant to them:
“We are still processing Friday and just how much it meant to us. We were nervous what our first event would trigger in us emotionally. I’ve never felt so confident and a sense of peace about the wonderful life our son has ahead. Thank you so much and looking forward to connecting again!”
- PWS Parent
A Night to Remember
The celebration began with a VIP champagne reception for our board of directors, honorees, and sponsors, before guests moved into a lively cocktail hour in the ballroom foyer. There, attendees sipped on drinks including our signature cocktail, the Hope Blooms (a creative twist on the French 76), while browsing more than 30 silent auction items.
Guests then entered the main ballroom for a delicious plated dinner, capped with a dessert featuring our 50th anniversary logo. At 8:00 p.m. CT, the program began with a moving video (watch below) that set the tone for the evening.
Comedy, Connection, and Honoring Pioneers
The night’s emcee, Aaron Weber, a nationally touring standup comedian, co-host of the Nateland Podcast, and dad to Olive (1), who is living with PWS, lit up the room with warmth and humor. His opening remarks had the audience laughing, connecting, and leaning into the joy of the celebration.
The centerpiece of the program was the presentation of PWSA | USA’s Pioneer Awards, honoring 12 individuals whose groundbreaking work has shaped our organization and the PWS community over the past five decades: Dr. Dan Driscoll, Dr. Merlin Butler, Dr. Moris Angulo, Dr. Suzanne Cassidy, Janalee Heinemann, Joan and Jim Gardner, Dr. Vanja Holm, Lota Mitchell, Jim Kane, and Fausta and Gene Deterling.
Five honorees joined us in person – Janalee Heinemann, Jim Kane, Dr. Merlin Butler, Dr. Moris Angulo, and Joan Gardner – each sharing brief but powerful remarks. We also shared heartfelt video messages from Dr. Dan Driscoll, Dr. Suzanne Cassidy, and Lota Mitchell.
A particularly moving moment came when Dr. Ingrid Holm accepted the award on behalf of her late mother, Dr. Vanja Holm, one of PWSA | USA’s founders. Ingrid’s presence reminded us all of the incredible legacy left behind by those who built the foundation we stand on today.
Looking Back, Launching Forward
To close the formal program, PWSA | USA’s Director of Community Engagement, Dorothea Lantz, delivered a speech that perfectly captured the spirit of the evening, honoring the grit and grace of our past while casting a vision for the next 50 years.
“Together, we’ve built something extraordinary. PWSA | USA created a national home for PWS when there wasn’t one. We built networks of care and knowledge where isolation once lived. We showed up in schoolhouses, statehouses, courthouses and on Capitol Hill. We funded research others called ‘too small’ and proved it was too important to ignore… But anniversaries aren’t just about looking back. They’re a launch pad. The road ahead is wider, the coalition stronger, and the destination closer. The question isn’t if we’ll get there, but how fast, and how many people will we bring with us… To fifty years of grit and grace, and the next fifty of discovery, equity, and joy. The next fifty years start now - with us.”
- Dorothea Lantz, Director of Community Engagement
A Celebration to Remember
When the program concluded, the celebration was just beginning. Griffin and the Gargoyles, a high-energy St. Louis band, had everyone on the dance floor for the rest of the night.
Guests also enjoyed a photo booth, capturing memories that have been added to a photo album we can’t wait to share at future events.
Thank You
The Journey of Hope Gala would not have been possible without the many people who contributed to its success:
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Our incredible sponsors, whose generosity made the night possible.
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The Journey of Hope Gala Committee and staff, who worked tirelessly on every detail - from auction items to honoree bios to the program schedule.
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The gala speakers and the presenters who honored our awardees on stage.
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Everyone who purchased tickets and tables, traveling from near and far to celebrate with us.
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Those who donated or participated in the Silent Auction, both in person and virtually. Your gifts power our Advocacy, Family Support, and Research initiatives.
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And the Ritz-Carlton staff, whose unmatched hospitality elevated every moment of the event.
From the bottom of our hearts: thank you.
We invite you to explore our official Journey of Hope Gala photo gallery by clicking the image below, and if you were with us in St. Louis, we’d love for you to upload your photos to our community album using the button below.
Here’s to 50 years of resilience, progress, and hope, and to the bright road ahead.
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.