Abbott Philson is 41 years old and lives with Prader-Willi syndrome. He lives in Maine and has been a board member for PWSA | USA for 25 years. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members some questions. Below are Abbott’s responses.
What is something you are really good at?
leadership, advocating, jigsaw puzzles, crossword puzzles, team player
What are some activities you like to do?
sailing, self advocacy, art, para-dressage, singing, acting
What makes you happy? What makes you laugh or smile?
being me and being loved
What is something that makes you interesting?
high functioning
Why should people learn about PWS?
to keep us healthy and safe so we can lead normal lives as much as we can.
What is one thing people should know about PWS?
food control
Is there something about PWS that people don’t understand?
behavior
In what way does PWS challenge you?
emotions and food seeking
How does PWS make you special?
It brings out a better understanding of other people’s difficulties.
Is there something you would say to parents of newly diagnosed individuals with PWS?
There is hope and a well-controlled diet and environment will make your child successful.
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.
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.
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.
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.
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.