Recruitment: Acceptance and commitment training (ACT) for fathers of adolescents with PWS, a pilot study funded by the Foundation for Prader Willi Research
Fathers who have an adolescent with PWS age 13-18 are invited to participate in a 4-session, online, small group training exercise to reduce father’s perception of stress, improve parenting satisfaction and increase family involvement. Participants must reside at home with their adolescent and the adolescent’s mother, have a personal computer with a camera, microphone and internet...
PWSA (USA) Launches New Corporate Partners Program
PWSA (USA) welcomes its first official Corporate Partner; Prader-Willi Homes of Oconomowoc, at the PWSA (USA) Board of Directors meeting on September 14th. A premier residential facility located in Dousman, Wisconsin, Prader-Willi Homes of Oconomowoc has been supporting individuals with PWS and their families for over 35 years. PWSA (USA) works with Corporate Partners to...
The Study of Pain in Adults with PWS
I would like to invite you to fill out a questionnaire for the study of pain in adults with Prader-Willi syndrome. This study of the VU University (Amsterdam) is conducted in the Netherlands, but the questionnaire is also distributed in Flanders and America. The purpose of the questionnaire is to gather experiences and knowledge about...
Special Announcement: Oxytocin Phase 2 Study Grant Funded
PWSA (USA) would like to thank all of the generous donors who contributed to the Association towards oxytocin research. You have made this – and future clinical trials on oxytocin possible. Phase 2 Study: Intranasal Oxytocin for Treatment of Infants with Prader-Willi Syndrome in Nutritional Phase 1a Principal Investigator: Jennifer Miller, MD Pediatric Endocrinology, University...
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.
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.
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.
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.
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.