We are deeply saddened to share the news of the passing of Jim Gardner, a beloved and instrumental figure in the history of PWSA | USA. Jim’s unwavering dedication and tireless advocacy laid the foundation for much of the work we continue today. As one of the organization’s earliest champions, Jim helped shape PWSA | USA into a national voice for individuals with Prader-Willi syndrome and their families—at a time when few resources or support networks existed. Jim served as a PWSA | USA board member from 1995 – 2004, three of those years serving as treasurer.
“Jim Gardner was not an upfront and center stage person but was a 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.” – Janalee Heinemann
“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.” – Jim Kane
Jim, along with his wife Joan, hosted the first PWSA | USA and IPWSO combined conference in 2001. They were integral to the creation of the PWSA Minnesota Chapter and partnered with Fausta and Gene Deterling to support the Oakwood Residence an agency providing residential care to individuals with PWS. Many of their programs are now operated by AME Community.
Jim’s legacy is one of compassion, vision, and leadership. His work helped bring together a community of families, professionals, and advocates who remain connected through the mission he so strongly believed in. His passing is a profound loss, but his impact will continue to guide and inspire us for years to come.
Memorial service: Monday, June 2, 2025, 11:00 A.M. at St. John in the Wilderness Episcopal Church (2175 1st Street, White Bear Lake, MN)
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.