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.
Known affectionately in the PWS community as “The Wizard,” Dr. Merlin Butler has devoted his life to advancing the science, clinical care, and understanding of Prader-Willi syndrome (PWS). A retired Physician Scientist, Clinical Geneticist, and Clinical Cytogeneticist, Dr. Butler built a distinguished career at the University of Kansas Medical Center while serving as a trusted leader, researcher, and mentor in the field of medical genetics.
In the early 1980s, Dr. Butler was the first to report that the genetic cause of PWS, a deletion on chromosome 15, was inherited from the father. Later in the decade, he partnered with researchers from Harvard University and determined that nearly one-third of PWS cases are due to maternal disomy 15, when both copies of chromosome 15 come from the mother.
These groundbreaking discoveries transformed the field and opened the door to accurate diagnoses, deeper clinical understanding, and better treatment options for those living with PWS.
Dr. Butler has published more on Prader-Willi syndrome than any other researcher in the world. His work includes developing growth charts for individuals with PWS, both with and without growth hormone therapy, tools that remain essential in clinical care today. Beyond PWS, his impact on the field of genetics is unmatched: more than 500 peer-reviewed articles, over 50 book chapters, and more than 20 textbooks authored or edited.
For 25 years, Dr. Butler served as Chair of PWSA | USA’s Scientific Advisory Board, helping guide the organization’s scientific mission with dedication and wisdom. His service has been recognized with PWSA | USA’s Lifetime Achievement and Distinguished Service Awards, as well as numerous professional honors, including the Gregor Mendel Award (2021), the Nelson Lifetime Achievement Award, and KU Endowment’s Chancellor’s Club Research Award (2016).
Raised in the Sandhills of Nebraska, Dr. Butler often reflects on his humble beginnings, attending a one-room schoolhouse as the only student in his class, working on his family’s farm, and riding horseback to school. That small-town upbringing instilled the perseverance and curiosity that shaped his groundbreaking career. Even in retirement, he remains a valuable resource to PWSA | USA, serving on the Clinical & Scientific Advisory Board and fielding genetics questions from providers and families alike.
When asked what advice he would share with others, Dr. Butler responded:
“Work hard, enjoy the journey, and never lose sight of your goals. Balance your ambitions with joy – read, explore, and cherish relationships. Success is not only about reaching a goal but about appreciating every milestone and finding happiness in what you do.”
Outside the lab and clinic, Dr. Butler enjoys fishing and restoring classic cars, hobbies that reflect his love of detail, patience, and creativity.
We are deeply grateful for Dr. Butler’s lifetime of contributions to the PWS community. His leadership, discoveries, and compassion have transformed the way the world understands and treats Prader-Willi syndrome, leaving an extraordinary legacy of hope for generations to come.
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.