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.
For more than four decades, Lota Mitchell, MSW, has been a guiding light in the Prader-Willi syndrome community. As a parent of Julie, who was born in 1969, Lota’s journey began at a time when there was no PWSA, no internet, and no widely available resources. Determined to find answers, she pursued every lead, from attending Dr. Vanja Holm’s clinic in Seattle to participating in research studies, and became a tireless advocate for her daughter and all individuals living with PWS.
In the early 1980s, while serving on the PWSA | USA Board, Lota helped launch a support program at The Rehabilitation Institute (later The Children’s Institute) in Pittsburgh, which began as a 4-week summer camp for seven children with PWS. By the early 1990s, the program had expanded into a year-round, 7-bed unit dedicated to providing care for individuals experiencing life-threatening health emergencies and psychiatric crises. Lota’s early vision laid the foundation for structured medical and psychiatric support for the PWS community, an initiative that continues to serve as a model of compassionate, specialized care.
Lota’s influence extends far beyond program development. She was a board member from 1980–1992 (chair for the final five years) and President from 2001–2004, serving a total of 15 years of leadership. She devoted decades to PWSA publications, including her work as Associate Editor and Editor of The Gathered View from 2008–2019, as well as serving on the Publications Committee. Lota developed beloved sections like The Home Front and Chuckle Corner, providing guidance, information, and a sense of community for families navigating the challenges of PWS. Even after stepping down, she remained an invaluable “second set of eyes” on every issue, ensuring the organization’s materials maintained the highest standards.
Those who worked closely with Lota recall her generosity, mentorship, and dedication. Barb Dorn shares:
“I love to teach. That was always one of my favorite parts of being a nurse. Thanks to the encouragement of Lota, I began my efforts at writing articles, contributing to booklets, and creating handouts to help other parents about the complexities in raising a child with PWS. Lota was instrumental in mentoring and encouraging me as a writer. Thanks for all of your help and support!”
Julie Doherty adds:
“I began working with Lota over 20 years ago when I volunteered to help proofread for The Gathered View and other publications. After she retired from board service, I was asked to be chair of the publications committee. Boy, did I have big shoes to fill!! Lota was always just a quick email or phone call away to share her wisdom and advice. Virtually every brochure, booklet, and handout created by PWSA has Lota’s touch on them. She’s truly provided a lifeline to so many over these years.”
In recognition of her decades of service, vision, and mentorship, Lota Mitchell received the PWSA Lifetime Achievement Award in 2013. Her dedication continues to inspire families, volunteers, and professionals around the world, a lasting legacy of care, education, and hope 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.