PWSA | USA's Family Support team has been hard at work conducting trainings around the country, both virtually and in-person, to assist those who support individuals affected by Prader-Willi syndrome (PWS). In 2022 alone, our Family Support Director Stacy Ward, MS and Alterman Family Support Counselor Kim Tula, MS, CSW gave 18 trainings to school professionals and residential providers around the U.S.
"While we have mostly directed our trainings this past year to educational and residential institutions, which we will continue in 2023, we are also available to provide specific training for family members. Many families have successfully utilized PWSA | USA's educational training opportunities for their student's Individualized Education Program (IEP)," said Stacy.
These trainings have proven to be very helpful for our community members and allow us to educate others who may not know or fully understand the needs of individuals living with PWS. Here is some of the feedback our team has received after their trainings:
We asked Stacy and Kim to share a memory from one of their previous trainings that made a positive impact.
Stacy: "I provided training in 2019 for a provider prior to them opening their first PWS program. I met with this program recently and all six individuals they support are thriving! The provider has done a great job maximizing each person’s current level of independence, while simultaneously supporting them in their growth."
Kim: "One memory from a school training was when discussing the food security and anxiety in the classroom. We were talking about how having food or lunch visible can impact ones ability to learn or focus. All of a sudden, the teacher and teachers aide said 'OMG, that explains so much. We thought just having them in an off limits area was good.' The team then worked to develop a new plan to ensure the lunches were securely locked up and out of sight.
I also recently provided a training for an agency and met with the staff and individual to talk about food security and structure. After the meeting, the staff and the individual both expressed their gratitude and the individual with PWS stated he felt better and calmer knowing staff would make sure he was getting what he needed to stay safe."
If you are interested in having PWSA | USA provide a training to your team or family, you can contact us directly at info@pwsausa.org or (941) 312-0400, or ask your provider to contact us to discuss training options.
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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.