Brooke Fuller is 51 years old and lives with Prader-Willi syndrome. She lives in Michigan and has been a board member for PWSA | USA since the beginning. 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 Brooke’s responses.
What is something you are really good at?
Advocacy for myself and others and my job. I run a small group of people, meet them in the community, and do various of activities.
What are some activities you like to do?
Coloring by number, puzzles, watching tv, bingo.
What makes you happy? What makes you laugh or smile?
My job and having friends. Helping people with advocacy issues. My cat, my family and friends, and living in my condo with support.
What is something that makes you interesting?
I am very good in navigating the system and insurance companies.
Why should people learn about PWS?
We are very interesting, and we are all different in aspects and live in different situations. We can do what most people do in everyday life.
What is one thing people should know about PWS?
Is that we live with PWS, but we are all different and we can achieve things and do things that most people do with support.
Is there something about PWS that people don’t understand?
That we are the same, but we all are different.
In what way does PWS challenge you?
It is hard to tell people that you need help in certain circumstances.
How does PWS make you special?
I am a very good advocate and assist my friends with things.
Is there something you would say to parents of newly diagnosed individuals with PWS?
That we can grow up and achieve greatness and live our lives like normal as possible.
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.