March is Women’s History Month and the 2025 theme is “Moving Forward Together: Women Educating and Inspiring Generations.”
There are many incredible women in the PWS community who have educated families, schools and residential facilities, and professionals, inspired generations, and ultimately have improved the quality of life for our loved ones living with PWS. We offer our tremendous gratitude to all of them!
There are so many to name and we can’t possibly list them all, but we wanted to bring to your attention some of the PWS Pioneers, those who really shaped the landscape of our community today. This list is merely an introduction as their work is vast and abundant. Look for future PWS history blogs to learn more about these inspiring pioneers.
And to the many incredible women making history in the PWS community today – we honor you as well!
Dr. Vanja Holm: Along with PWS parents Gene and Fausta Deterling, Dr. Holm helped establish Prader-Willi Syndrome Parents and Friends, soon to be renamed Prader-Willi Syndrome Association (PWSA). In August of 1977, Dr. Holm and Peggy Pipes published an article, “On the Management of PWS” in the Journal of Pediatrics, one of the first articles targeted to inform pediatricians about this disorder. Learn more about Dr. Holm and her extensive work in the PWS community at Pioneers in Obesity Prevention (And More); Part 3 in a Series – Prader-Willi Syndrome Association | USA
Peggy Pipes: Peggy Pipes was as dietician and PWSA board member from 1977-1983. She worked with Vanja A. Holm, M.D., at the Child Development and Mental Retardation Center in Seattle, Washington, and developed a dietary plan that proved children with PWS could lose weight. The Power of Parents: Gene and Fausta Deterling, Part Four in a Series – Prader-Willi Syndrome Association | USA
Lota Mitchell: In the early 1980s, as a parent and a board member of PWSA l USA, Lota was interested in starting a support group for parents connected to a medical facility. The Rehabilitation Institute (TRI) in Pittsburgh (eventually renamed The Children’s Institute) agreed to start by sponsoring a 4-week summer camp. That first summer, seven kids with PWS, ages 8-12 years, attended. By the early 1990s, the program was year-round, and the term “camp” was dropped. A 7-bed unit was opened, which devoted its care to persons with PWS who were experiencing life-threatening health emergencies as well as psychiatric crises. Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis – Prader-Willi Syndrome Association | USA
Bae Maier: Bea Maier was senior coordinator with The Rehabilitation Institute of Pittsburgh, now renamed to The Children’s Institute, for 25 years, with many of those years devoted to PWS. In 1980 she developed a special inpatient program for PWS. “Bea became very dedicated to PWS. She attended meetings of the local parent support group, helping with programs and providing guidance. She probably knew as much, or more, about PWS as anyone in the country, and it was there for the asking, never pushed on anyone.” – Lota Mitchell Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis – Prader-Willi Syndrome Association | USA
Dr. Jeanne Hanchett: A graduate of Vanderbilt University (1962-1964), Dr. Jeanne Hanchett was one of the first physicians who provided care for persons hospitalized at TRI/TCI. Jeanne, along with her husband, Dr. James Hanchett, saw some of the most complex cases of persons experiencing severe breathing and lung complications, along with complications of diabetes and hypertension. They cared for patients who were struggling with some of the most serious complications of morbid obesity. They were frequent presenters at PWSA l USA conferences and contributed to the second and third editions of The Management of Prader-Willi Syndrome. Dr. Jeanne Hanchett served on the PWSA l USA Scientific Advisory board from 1992-2006. Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis – Prader-Willi Syndrome Association | USA
Dr. Suzanne Cassidy: Dr. Cassidy is a pioneer in clinical care and research of PWS whose vision led to the creation of IPWSO (International Prader-Willi Syndrome Organisation). She realized that an international conference of scientists and researchers committed to the study of PWS would have an enormous impact. This first meeting was held with seventeen countries from four continents in attendance. As a result, Prader-Will syndrome became a global collegial research community. Dr. Cassidy was the first U.S. professional delegate for IPWSO and continued in this role until she was elected to be president of IPWSO in 2010. Pioneers in PWS – The Delegates to IPWSO – Prader-Willi Syndrome Association | USA
Dr. Linda Gourash: As a developmental pediatrician, Dr. Gourash became the admitting physician and treatment team leader of the PWS program at TCI in the early 2000’s. She worked almost exclusively with children and adults with PWS and related disorders. In 2005, she and Dr. Janice Forster formed the Pittsburgh Partnership, where they both served as specialists in PWS, as independent consultants. Dr. Gourash has served on the PWSA | USA Clinical Advisory Board since 2004, on the Board of Directors from 2006-2009, and contributed to the third edition of The Management of Prader-Willi Syndrome. Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis – Prader-Willi Syndrome Association | USA
Dr. Janice Forster: Dr. Forster is a Child and Adolescent Psychiatrist in private practice in Pittsburgh, PA, specializing in Developmental Neuropsychiatry. She has had over 25 years of clinical experience in the evaluation and treatment of individuals with developmental disabilities. She served as a psychiatric consultant at TCI where she evaluated more than 250 individuals with PWS and has managed the severe manifestations of the disorder across all levels of care. She is also co-founder of Pittsburgh Partnership, specializing in PWS and contributed to the third edition of The Management of Prader-Willi Syndrome. Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis – Prader-Willi Syndrome Association | USA
Kate Beaver and Barb Dorn: In March of 2006, due to the overwhelming demand for crisis support services, Kate Beaver (parent of a child with PWS who has a master’s in social work) was hired. Over 1,000 calls were handled in 2007 and the figure for 2008 increased by 20%. The services of the Crisis Counselors were filling a large need in the PWS community. Barb Dorn, parent of a young adult with PWS with 25 years of experience as a nurse, was employed from 2006-2007. For the many years that followed, Barb and Kate co-authored numerous booklets, brochures and handouts, as well as updating some of the materials already available. They created the Transition Planning Resource Guide, which was a huge resource for the community when it was published in 2016. Pioneers in Support – Crisis Intervention Counselors – Prader-Willi Syndrome Association | USA
Janalee Heinemann: Janalee, the stepmother of an individual with PWS, served as a board member for PWSA l USA from 1986-1989, assumed leadership as president from 1991-1996, and then became Executive Director until 2007. Under Janalee’s leadership, crisis counselors were hired to help with students and adults in trouble, medical, education, consultation and emergencies were addressed, and there was an expansion of educational materials on a wide variety of pertinent topics. “She is an exceptional person who is an icon in the Prader-Willi field, both nationally and internationally. Under her leadership as the Executive Director, she turned PWSA | USA into a first-rate patient advocacy and support group.” – Daniel J. Driscoll, MD, PhD, FAAP, FFACMG Leading PWSA | USA; Our Executive Directors – Prader-Willi Syndrome Association | USA
Joan Gardner: Joan was a parent delegate for PWSA to IPWSO. Along with her husband, Jim, Joan hosted the first, and at the time, only combined IPWSO and PWSA | USA conference in Minnesota in 2001. In June of 2025, PWSA | USA is partnering with IPWSO and FPWR to host the International PWS Conference. Pioneers in PWS – The Delegates to IPWSO – Prader-Willi Syndrome Association | USA
Pam Eisen: Pam Eisen was elected as parent delegate to IPWSO in 2002 and then elected president of IPWSO in 2004 in New Zealand. Pam and Janalee Heinemann traveled all over the world with Giorgio Fornasier presenting PWS educational sessions for parent and professional groups. IPWSO was a true presence in countries helping families to form associations, educating both parents and physicians about managing the special needs of children and adults who have PWS. Pioneers in PWS – The Delegates to IPWSO – Prader-Willi Syndrome Association | USA
Carolyn Loker: Carolyn is the parent of an individual with PWS. In 1999, she began calling parents of newly diagnosed babies who contacted PWSA | USA. She recognized that many of the parents she was mentoring would be good in the mentor role as well, so she developed a manual and began a process to establish a network of parent mentors. She also developed the initial Packet of Hope materials that were sent to parents. At the same time Carolyn began the Parent Mentoring program, she was serving as a board member from 1999 to 2007, serving in the role as president for her last 3 years. She also created the first online chat boards and Yahoo support groups. Pioneers in PWS – The Parent Mentoring Program – Prader-Willi Syndrome Association | USA
Dr. Barbara Y. Whitman, Ph.D.: Barbara is a distinguished professor of pediatrics and assistant dean of graduate medical education at Saint Louis University School of Medicine. Her career trajectory shifted when she met a mother of a child with Prader-Willi syndrome, inspiring her to dedicate over 40 years to researching and understanding PWS. Dr. Whitman has published extensively on the syndrome, contributing significantly to behavioral and psychological aspects. Her work includes co-editing the fourth edition of Management of Prader-Willi Syndrome, along with many other publications and written materials. Beyond her research, Dr. Whitman has been instrumental in developing clinical programs that provide comprehensive care for individuals with PWS and their families. Her commitment to integrating clinical practice with research has enhanced the quality of life for many affected by PWS. Dr. Whitman has served on PWSA | USA’s Board of Directors and currently serves on the Clinical & Scientific Advisory Board.
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.