PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS
The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In...
PWSA (USA) approves grant: Profiling of the gut microbiome in children with PWS
Profiling of the gut microbiome in children with PWS Principal Investigator – Andrea M Haqq, MD, MHS, FRCP University of Alberta, Canada ABSTRACT Individuals with a genetic condition called Prader-Willi Syndrome (PWS) are at risk for development of obesity at a young age. Children with PWS often have a very high food intake because...
PWSA (USA) Approves Grant
We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies....
Please Participate in Research on PWS Caregiver Stress
I would like to invite you to participate in a research study on the ‘Relationship between caring for individuals diagnosed with Prader-Willi syndrome (PWS) and caregiver stress’. The results will provide vital information to caregivers, service providers, and policy makers on strategies and supports needed in the care of individuals with PWS. The survey will...
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 variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย 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 Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs 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 Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.