The information below was provided by the Global PWS Registry
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We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth.ย If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new โFeeding Tube Use and Complicationsโ survey.ย This survey will help PWS experts in the newly formed PWS-CLIC (PWS Clinical Investigation Collaborative) learn more about how often feeding tubes are used in the PWS population, complications from feeding tube use, and duration of use.ย The mission of the PWS-CLIC is to improve the quality of clinical research and medical care for people with Prader-Willi syndrome (PWS) across the lifespan through collaborative investigation and research to support evidence-based care.ย This project on feeding tubes is the first of several new projects to be launched.
You can contribute to this research easily from the comfort of your home.ย Simply login to your account in the Global PWS Registry www.pwsregistry.org.ย To complete this survey, you must have first completed the โDiagnosisโ and โBirth Historyโ surveys.ย If you have already done this and indicated your loved one has a history of using a feeding tube you are ready to complete the new โFeeding Tube Use and Complicationsโ survey.
If you need help setting up or reactivating your account, or if you have any questions, email us: info@pwsregistry.org or info@pathforpws.com
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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.
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 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.
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 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.