Kate Kane is 43 years old and lives with Prader-Willi syndrome. She is legally a resident in the state of Maryland but resides in a home in Wisconsin for people with PWS. Kate has been a board member for PWSA | USA for over 15 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 Kate’s responses.
What is something you are really good at?
Being family oriented and keeping in touch with all my family members and relatives, even distant relatives!!!!!! I’m also GREAT at being an aunt, my nephews and my niece call me Auntie Kate.
What are some activities you like to do?
-Personal Training
-Hanging out with my friends
-Being an Aunt!!
-Being a Sister to my little grown up Sister Molly!!!!!!!!
-Being a sweet, kind, loving BEST Sister-in-Law ever to my sweet Brother-in-Law Jamie!!
-Being an amazing Daughter!!!!!
-shopping on-line for myself and gifts for family and friends.
-Hanging out with my electronics.
-Traveling to see family and friends!!!!!!!!!!
What makes you happy? What makes you laugh or smile?
Bring a great family member, Aunt, Sister, Daughter and friend!!!!!!!!!!!!!!
What is something that makes you interesting?
I am an animal LOVER!!!! And can’t stand to see or hear about animals being abused OR mistreated.
Why should people learn about PWS?
PWS in itself as a syndrome
What is one thing people should know about PWS?
What triggers a person with PWS to get angry or mad or frustrated.
Is there something about PWS that people don’t understand?
The food security AND that it is NOT fair to the person living with PWS to eat something in front of them that is different than what they are eating or can’t have.
In what way does PWS challenge you?
-Food and holding down a real job in the community.
How does PWS make you special?
-Food seeking
-jobs in the community
Is there something you would say to parents of newly diagnosed individuals with PWS?
Please always be there for your child, you will have some rough moments with them but let them show the good side of them.
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.