Conor Heybach is 44 years old and lives with Prader-Willi syndrome. He resides in Chicago and has been on the Adults with PWS Advisory Board since 1996. 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 Conor’s responses.
What is something you are really good at?
I am really good at playing Chess.
What are some activities you like to do?
I enjoy reading. I like doing puzzles. I like teaching and playing chess. I love to swim. I love to dance and play video games.
What makes you happy? What makes you laugh or smile?
Family and friends. Advocating for PWS and rare disease communities. Being a member of the Board and being an inspiration to others. I always laugh when people tell me jokes. Friends, family, PWSAUSA and XYKAT XR being approved all make me smile.
What is something that makes you interesting?
I teach and coach chess at Altus Academy in Chicago, IL. I have advocated on the State and Federal level for PWSAUSA.
Why should people learn about PWS?
PWS is a very rare and complex disease.
What is one thing people should know about PWS?
Every PWS Individual is different and unique.
Is there something about PWS that people don’t understand?
The smarter an Individuals with PWS is the more likely they will go unnoticed.
In what way does PWS challenge you?
I am an extremely smart individual with PWS. Therefore, it has been a challenge not having autonomy.
How does PWS make you special?
I am a unique individual with PWS, but despite the many obstacles in my way I have have become an extraordinary man with PWS.
Is there something you would say to parents of newly diagnosed individuals with PWS?
You are not alone. Gather all the information from PWSAUSA. Remember there is always a light shining bright at the end of the tunnel.
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.