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.
Honoring Dr. Dan Driscoll, MD, PhD
PWSA | USA Board Member for 21 years
Chair, Clinical Advisory Board (1999–2022)
Chair, Clinical and Scientific Advisory Board, IPWSO (2016–present)
Few individuals have left as indelible a mark on the PWS community as Dr. Dan Driscoll. A gifted physician, scientist, educator, and advocate, Dr. Driscoll has dedicated his career to unraveling the complexities of Prader-Willi syndrome and improving the quality of life for those it affects.
Currently a tenured Professor in the Division of Genetics and Metabolism at the University of Florida College of Medicine, Dr. Driscoll began his faculty career there in 1989 after completing his fellowship in Medical Genetics at the prestigious Johns Hopkins Hospital. He holds multiple advanced degrees, including an M.D., Ph.D., and M.S. in Genetic Counseling and is board-certified in Pediatrics, Clinical Genetics, Clinical Cytogenetics, and Clinical Molecular Genetics.
Dr. Driscoll has been conducting clinical and laboratory research on PWS since the late 1980s. His lab made several foundational discoveries, including:
- – Developing DNA methylation analysis, the gold-standard technique now used to diagnose PWS worldwide
- – Identifying the Nutritional Phases of PWS, a model that has transformed care strategies and become widely adopted by experts globally
As principal investigator for the PWS component of an NIH-funded 12-year national Rare Disease Center grant, Dr. Driscoll helped chart the natural history of PWS, providing crucial insights that continue to inform medical research and clinical care.
Beyond the lab, Dr. Driscoll has long served as a trusted leader and voice for the community. He chaired PWSA | USA’s Clinical Advisory Board for 23 years and served on the organization’s Board of Directors for 21 years. He currently chairs the Clinical and Scientific Advisory Board of the International Prader-Willi Syndrome Organisation (IPWSO), representing more than 100 countries.
His work has been recognized with numerous honors, including the Basil O’Connor Starter Scholar Research Award from the March of Dimes, the University of Florida Research Foundation Professorship, and election into the Society of Scholars at Johns Hopkins University, which honors individuals who have achieved exceptional professional distinction.
Dr. Driscoll’s unwavering passion for improving the lives of those with PWS, mentoring future medical leaders, like Dr. Jennifer Miller, and advancing the science of genomic imprinting and rare diseases has helped shape the field – and our community – for generations.
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.