Our Research Statement
Many of the world’s most renowned PWS researchers and clinicians are members of PWSA | USA’s scientific and clinical advisory boards. Together they dedicate thousands of hours yearly to enhance research, write educational materials, and provide consultation; nearly all the major breakthroughs in understanding and treating PWS have come from these pioneers and heroes. PWSA | USA has been supporting research since 1983 and remains committed to supporting future advancements and breakthroughs.
At PWSA | USA we work to integrate what we have learned about the needs of our families through our support programs — with research that we think will make an important and practical difference in the lives of those affected by PWS
Our Research Strategy
The current focus of PWSA | USA research is supporting projects that have the potential for immediate and high impact for the PWS community. Therefore, PWSA | USA will support research-based translational grants or those showing high promise for translating basic biomedical knowledge to clinical application. The goal is to fast-track better treatment for the syndrome.
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Your Gift Will Change Lives
Your donation to PWSA | USA’s Research Initiatives provides hope and opens doors to a brighter future for individuals with PWS like John, 15 (pictured). Gifts will go towards funding for research in treatment development, clinical trials, and more. Donation form coming soon.
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.