Many students with PWS and parents have faced many challenges over the years in educating and advocating for their right to a free and appropriate education. PWSA l USA staff have spent many hours developing handouts, participating in Individual Education Planning meetings and assisting families in addressing other educational concerns. In 2015, The Special Education Advisory Board (SEAB) was created. Initially, Evan Farrar chaired the board. Following Evan, Amy McTighe and Jennifer Bolander became the co-chairs. Amy then assumed this leadership role on her own. From 2016 to 2017, Jennifer served in the role as National Special Education consultant for PWSA l USA. Today, Stacy Ward is the primary education advocate and educator at PWSA l USA. She, along with other Family Support counselors, do an amazing job in their advocacy efforts. The other members of the SEAB contribute countless hours as educators, advocates and consultants to educators across the country.
| Current SEAB Members | Past (retired) SEAB Members |
| Amy McTighe – chairperson | Tanya Johnson |
| Mary K. Ziccardi | Kate Beaver (PWSA l USA Family Support Counselor) |
| B.J Goff | Evan Farrar (PWSA l USA Family Support Counselor) |
| Brittni Kliment | Tom Conway (PWSA l USA Board of Directors). |
| Stacy Ward (Director of Family Support PWSA l USA) | Jennifer Bolander (PWSA l USA National Special Education Consultant |
| Staci Zimmerman | Tammie Penta (PWSA l USA Board of Directors). |
Evan Farrar wore many hats during his time with PWSA l USA. As a Crisis Counselor, he helped many families who were facing challenges in getting an appropriate education for their child with PWS.
In the fall of 2007, Evan Farrar was hired full time to expand the crisis program. He had a Master’s of Divinity degree and completed his Master of Mental Health Counseling degree during his employment with PWSA | USA.
Providing resources to schools and special education advocacy were Evan’s main focus. He holds a certificate from the William & Mary Law School of Special Education Advocacy and the Lehigh University Special Education Law Symposium. Evan was responsible for the establishment of the Wyatt Special Education Advocacy Training (WSEAT), which launched the association’s advocacy efforts. Because of this passion, he was instrumental in getting the SEAB created. He left in November of 2017 to open a private counseling practice.
Dr. Amy McTighe, PhD has over 20 years of experience supporting persons with diverse learning needs in various settings. This experience has included supporting children and their families in public and private school settings, hospital rehabilitation programs, and inpatient and outpatient behavioral health programs. Additionally, she has provided support to adults in community day programs, group homes, and supported living environments. Dr. McTighe is a graduate of William and Mary Law School’s Institute for Special Education Advocacy and is a certified Mental Health First-Aid trainer. She has presented at the state, national and international level about Prader-Willi syndrome. She has published many articles on Prader-Willi syndrome and recently authored a children’s book titled Penny: A Tale of Lost Currency.
Jennifer Bolander is a graduate of John Carroll University and lives in Ohio. She has a daughter, Sophia with PWS. Jennifer completed PWSA l USA’s Wyatt Special Education Advocacy Training in 2013 and then went on to complete a rigorous 9-month Special Education Training course with the Council of Parent Advocates and Attorneys in May of 2015. She has served as an advocate and resource to many students with PWS and their parents.
Stacy Ward, MS is the Director of Family Support for PWSA l USA. She has over 17 years of experience working with and advocating alongside individuals with PWS. Stacy has presented at conferences throughout the country on a variety of topics related to PWS, including behavior management, educational needs and residential services and staff training.
Over the years, some of the accomplishments and services initiated by the SEAB include:
- Wyatt Special Education Advocacy Training. This was started in 2013 as an in-person training opportunity. It has transitioned to an online format that entails 7 modules.
- “School Times” was a school related publication that included many articles and features on various topics related to education.
- Revision and updates on education handouts and publications.
- Conducted the “School Experience Survey” in 2016 to help PWSA l USA gather data on various student experiences, successes and challenges to help target future education ventures.
Over the years, there have been many dedicated professionals who have devoted much time and effort into helping students, parents and educational professionals gain a better understanding of the individual needs of students with PWS and some of their unique educational adventures.
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.