This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized at the event.
These honorees have shaped the Prader-Willi syndrome (PWS) landscape in profound and lasting ways – through groundbreaking research, tireless advocacy, compassionate care, and unwavering support for families and individuals living with PWS.
We hope you’ll join us in celebrating their legacies, and in person at our Journey of Hope Gala, happening Friday, September 26, 2025, at the Ritz-Carlton in St. Louis, MO. This will be a night to remember, filled with inspiration, gratitude, and a renewed commitment to the next 50 years of our mission.
Few families have had as profound an impact on the Prader-Willi syndrome community as Jim and Joan Gardner. Together, they helped shape PWSA | USA into a national and international leader in support, advocacy, and education for families affected by PWS. In 2001, they hosted the only combined IPWSO and PWSA | USA conference in Minnesota, a groundbreaking weeklong event attended by 1,250 people. The conference offered separate programs for scientists and professionals, professional caregivers, leaders from countries and states, and joint parent-professional sessions.
This pioneering approach highlighted the importance of caregiver-focused education, including case managers, teachers, healthcare providers, residential staff, therapists, nutritionists, and others, and inspired IPWSO to develop FamCare, a resource that compiles best practices for families whose children may never leave home.
Jim and Joan were also instrumental in supporting Oakwood Residence, one of the earliest group homes for individuals with PWS. Their son, Larry, was placed in one of the first small group homes, and Oakwood became a model for PWS residential management for years. Many of the programs they helped launch are now operated by AME Community, continuing their legacy of care and innovation.
Jim served on the PWSA | USA Board of Directors from 1995–2004, including three years as treasurer, bringing his financial expertise, quiet leadership, and tireless dedication to every initiative. As Janalee Heinemann recalls:
"Jim Gardner was not an upfront and center stage person but was part of the bedrock foundation of PWSA | USA. With a background in banking, I counted on him as treasurer for years to keep our finances (and me) in line. Jim was not one to look for glory. I will always remember him as the faithful person behind the booth selling PWSA logo items at conferences for many years and then helping Joan with the IPWSO booths. They were not only PWS parents devoted to Larry but also partners in all things PWS."
Jim Kane adds:
“Jim Gardner should be remembered as the ultimate PWS team player. He brought a wealth of finance and ‘no-nonsense’ management skills and experience to his lone dedication to PWSA | USA. I could always count on Jim to respond with an offer to help, words of PWS wisdom, or just a good old-fashioned listening common sense.”
Joan has served as Parent Delegate to IPWSO (2010–2016) and co-chaired numerous parent programs nationally and internationally, including Orlando (2005), Ohio (2004), Armenia (2010), Cambridge (2013), New Zealand (2004), Romania (2007), and the joint USA & IPWSO conference (2001). Over the years, Jim and Joan attended most international PWS conferences, earning the love and admiration of families and professionals alike. Michelle Torbert reflects:
“Joan and Jim Gardner have done so much for PWSA | USA and IPWSO that we would be here all night if we tried to name everything. They have given so much of their time, talent, and treasure, and Joan continues their legacy even after the sudden passing of Jim. Joan has been a true mentor to me in many ways, and it is an honor to know her and to have shared the time I had with Jim.”
The Gardners’ vision, compassion, and leadership have left an indelible mark on the PWS community. Jim passed away in May 2025, but his legacy endures through the countless families, professionals, and programs he helped shape. Joan continues to honor their shared mission, volunteering with PWSA | USA and IPWSO as frequently as possible, ensuring their work and impact carry forward. In recognition of their lifelong contributions, Jim and Joan Gardner were honored with the PWSA Lifetime Achievement Award in 2012, a fitting tribute to pioneers whose dedication has inspired generations of families, caregivers, and advocates.
Journey of Hope Gala Honorees
Dr. Moris Angulo
Dr. Merlin Butler
Dr. Susie Cassidy
Fausta Deterling
Gene Deterling (Posthumously)
Dr. Dan Driscoll
Joan Gardner
Jim Gardner (Posthumously)
Janalee Heinemann
Dr. Vanja Holm (Posthumously)
Jim Kane
Lota Mitchell
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.