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 professionals have left as profound an impact on the Prader-Willi syndrome (PWS) community as Dr. Vanja Holm. A developmental pediatrician, researcher, and advocate, Dr. Holm devoted her life to advancing awareness, clinical care, and research for individuals with PWS and their families, at a time when knowledge of the syndrome was scarce and hope was often in short supply.
A graduate of the Karolinska Institute in Stockholm, Dr. Holm moved to Seattle in the 1950s, where she completed her pediatric training at the University of Washington.
She went on to serve as a developmental pediatrician at the Child Development and Mental Retardation Center (later the Center on Human Development and Disability) and as Medical Director of the Boyer Children’s Clinic, dedicating more than 20 years to caring for children with developmental disabilities.
In partnership with Peggy Pipes, MRH, RD, Dr. Holm pioneered a nutritional and environmental approach to managing PWS that transformed medical guidance. At a time when parents were told there was little hope, that children with PWS might “eat themselves to death,” Dr. Holm and Pipes provided practical tools and reassurance that lives could be not only extended, but enriched. Their landmark publications, including the 1972 Journal of Pediatrics article and the 1973 “Weight Control in Children with PWS” in the Journal of the American Dietetic Association, became foundational texts in PWS care.
Dr. Holm’s influence reached far beyond the clinic. Alongside PWS parents Gene and Fausta Deterling, she helped establish what became the Prader-Willi Syndrome Association (PWSA | USA), serving on its board from 1977–1987, including as Chair of the Scientific Advisory Board. She co-organized the first Scientific Conference on PWS in 1979, which led to the publication of the first comprehensive book on the syndrome in 1981.
She was also a tireless awareness ambassador, bringing national attention to PWS through articles in Time, Newsweek, Today’s Health, and Good Housekeeping, as well as coverage by the Associated Press and regional media outlets. According to PubMed, her scholarly work included 45 research papers and 47 highly influential citations, covering areas from diagnostic criteria and growth hormone therapy to scoliosis, ghrelin, and multi-disciplinary approaches to care.
Her mentorship and compassion left lasting impressions on colleagues. Dr. Suzanne Cassidy recalls:
“Dr. Vanja Holm was an important and caring specialist physician who was devoted to medical care, research, and education about people with PWS. She was responsible for increasing awareness of PWS within the medical community. I had the privilege of collaborating with her for my Medical Genetics fellowship research project, in which we did one of the first studies on the chromosome 15 deletion in people with PWS. And we worked together to set up the Scientific Advisory Board consensus conference that developed the first set of formal diagnostic criteria for PWS, with her as chair. There is no doubt that Vanja was responsible for inspiring my career-long interest in PWS. She holds a very special place in the history of our knowledge about PWS for families and care providers. She will be greatly missed and I will always think of her with gratitude and admiration.”
Through her clinical care, scientific contributions, and unyielding advocacy, Dr. Vanja Holm helped change the narrative of what was possible for individuals with PWS. Her pioneering work continues to guide families, researchers, and clinicians around the globe.
Dr. Holm passed away in November 2020 after a 10-year battle with dementia, but her legacy, of science, compassion, and hope, endures as a cornerstone of 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.