It’s hard to imagine a time when you couldn’t pick up your phone or computer and do a “search” for information, resources and/or support on PWS. Or a time when there were no organizations, homes, conferences devoted to advancing research, education and awareness about PWS. A time when there was little to no research to assist in helping us understand and manage the many manifestations of PWS. Parents were often very isolated from other families. Information that was shared was often very depressing and inaccurate. Unfortunately, many of us do recall these times and we are so grateful to all of the people who have helped to change this. So much progress has taken place and is continuing.
We are proud to announce a new feature in which we will be acknowledging “Pioneers in PWS – Past and Present”. We plan to highlight parents and professionals who have been leaders in the growth of PWSA | USA as well as who furthered our advancement in knowledge and research of PWS. At times, it will be a history lesson as well as a sincere thank you to all who have helped PWSA | USA become the leader in supporting persons with PWS. Since we are continuing to explore so many new areas of PWS, we will also share our current day pioneers as well. This is not an exhaustive list but an attempt to help us appreciate those who have given us so much. We want to take this opportunity to thank all of our past and present-day pioneers for working so hard to make it better for all of us.
2020 was a year we will never forget. However, we can’t forget to acknowledge and celebrate the fact that it was the year that PWSA | USA celebrated its 45th anniversary. This is an organization which started as an idea in the home of Gene and Fausta Deterling, but is now an organization with a worldwide presence and expertise which has advanced the knowledge, support and research of PWS.
Contributed by Barb Dorn
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.