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.
Jim Kane has been a steady, guiding presence in the Prader-Willi syndrome (PWS) community for several decades. A devoted father, dedicated board leader, and tireless advocate, Jim’s influence has shaped both the direction of PWSA | USA and the lives of countless families affected by PWS.
Jim’s journey with PWS began in 1986, when his daughter, Kate, was diagnosed at age 8 by Dr. Dan Driscoll at Johns Hopkins Hospital. Though genetic testing available at the time failed to confirm the clinical diagnosis, Kate’s case inspired Dr. Driscoll’s pursuit of better answers, leading to the development of DNA methylation analysis, now the gold standard for PWS testing worldwide.
Kate’s story, and Jim’s steadfast advocacy, helped change the trajectory of PWS diagnosis and care for families everywhere.
Jim joined the PWSA | USA Board of Directors in 1992, serving for more than 12 years across two terms, including as Board Chair. He also served as Treasurer for five years and chaired the Finance Committee, guiding the Association through key transitions and challenges with his hallmark steadiness and vision. Janalee Heinemann, former Executive Director, reflected:
“Jim Kane is an important cornerstone of the foundation of PWSA | USA. He was never one to look for recognition but could always be counted on to be involved over the many years of transition, new staff, and new boards. Jim was a steady and quiet influence on the growth of PWSA | USA, giving up his time, talent, and money without expecting anything in return.”
Jim was also instrumental in advancing the world’s understanding of one of PWS’s most difficult symptoms: hyperphagia. He was the brainchild and key organizer of the first two International Hyperphagia Conferences, in 2008 in Baltimore and in 2012 at the Pennington Biomedical Research Center, the world’s largest obesity research center. These groundbreaking gatherings brought together leading researchers and families, setting the stage for critical scientific advancements that continue to shape treatment and research today.
In recognition of his vision and tireless service, Jim received the PWSA | USA Lifetime Achievement Award in 2012, alongside fellow leaders Jim and Joan Gardner.
“It was thanks to Jim Kane and Jim Gardner that I became the Executive Director. The two Jims were probably the most faithful, unrecognized heroes within the Association over the years—always looking out for the good of PWSA | USA, never looking for credit.”
Colleagues and friends echo this sentiment. Barb Dorn recalls:
“I will never forget when Jim reached out for help in setting up a residential care database across the U.S. I didn’t know much about the technical aspects of this daunting project, but I said yes. (It’s difficult to say no to Jim.) Jim is always optimistic and willing to help in any way he can. He’s been a good friend and a great asset to PWSA | USA.”
Dr. Dan Driscoll added:
“Few people have done as much as Jim Kane to improve the lives of individuals with PWS. He has served PWSA | USA in numerous capacities, including two separate stints as Board Chair. He has been tireless in his quest to better understand and combat hyperphagia, and he has contributed not only his time and expertise, but also significant financial support, much of it quietly and behind the scenes. I feel honored and privileged to know him.”
Jim’s devotion to PWSA | USA was matched only by his devotion to his daughter, Kate, whom Janalee affectionately described as making him worthy of the title “PWS Father of the Century.” His love for Kate fueled his vision for a better future for all children and adults with PWS.
Today, Jim remains an active voice for the community, most recently joining the 2024 PWSA | USA Fly-In in Washington, D.C. as a passionate advocate. Thank you, Jim, for all you do and have done for the PWS community.
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.