OUR MISSION
To support, educate and advocate for persons with Prader-Willi Syndrome, their families and professionals in meeting the challenges of this disability.
OUR VISION
- All infants born with Prader-Willi syndrome will receive a diagnosis within their first year of life so that they can receive early intervention services; treatment for health conditions; and begin a life that promotes health, wellness and success for them and their families.
- All children and adults who have Prader-Willi syndrome will successfully play, learn, work and live in their communities with the knowledge and understanding of their disability so that the appropriate educational, environmental and behavioral supports are in place that allow them to have a positive quality of life and live as independent as possible.
- All persons with Prader-Willi syndrome, parents, care givers and others who support and assist persons with Prader-Willi syndrome will receive the necessary support, education and tools needed to become informed advocates and educators so the proper supports are in place that allow them to have a positive quality of life and live as independent as possible.
OUR WORK INCLUDES
- Providing awareness and knowledge of Prader-Willi syndrome to all who reside in the State of Wisconsin.
- Connecting families and professionals to resources in their communities and providing consultative and educational services as needed.
- Working collaboratively with other organizations and professionals to advance our knowledge and understanding of Prader-Willi syndrome through various research endeavors.
- Advocating for persons with PWS by participating in residential, educational and other planning and team meetings.
- Providing social opportunities to enrich the lives of people with Prader-Willi syndrome.
- Organizing parent and professional workshops and training.
Contact Information
Prader-Willi Syndrome Association of Wisconsin, Inc. (PWSA-WI, Inc.)
PO Box 226
Oconomowoc, WI 53066
(920) 733-3077
Crystal L. Boser, President
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.