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. If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new ‘Feeding Tube Use and Complications’ survey. 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. 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. 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. Simply login to your account in the Global PWS Registry www.pwsregistry.org. To complete this survey, you must have first completed the ‘Diagnosis’ and ‘Birth History’ surveys. 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 ‘Feeding Tube Use and Complications’ 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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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.