Family Support
PWSA | USA supports individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources. We educate medical providers, educators, and professional care givers about PWS and how to best support individuals with the syndrome. Donate to the Family Support Advocacy here.
Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.
Advocacy & Awareness
Raising awareness and effective advocacy are critical to effecting positive change in and for the Prader-Willi syndrome community. PWSA | USA is committed to empowering individuals with PWS and their families with resources and tools such as the Public Policy Action Center.
Jacob’s Story
Jacob’s Story, as told by his mom, Teri: “Jacob is my 25 year old son with UPD PWS. Thankfully PWSA has been there for us since Jacob was born. We have definitely had challenges over the years. Those teenage years were filled with behaviors so we tried an ISL (independent supported living) in Kansas City,...
Pioneers in Advocacy for Special Education
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...
Hunter’s Story: Our Happy Boy!
Hunter’s Story, as told by his mom, Nicolette: “I am mom to Hunter who is almost 2 years old. We have made it through many ups and many downs over the last almost 2 years. When Hunter was born he spent 43 days in 2 different NICUs. He was born at a hospital that thankfully...
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.