Are you a caregiver of at least one child, of any age, who has been diagnosed with Prader-Willi Syndrome? Do you have access to the internet and an internet-connected device? Can you read and write in English? Are you over the age of 18?
If you answered YES to these questions, you are invited to participate in a survey study to better understand the behavioral needs of children with PWS, the types of interventions that are commonly used, and the need for additional services.
All types of caregivers are invited to participate, including biological parents, step-parents, foster parents, grandparents or other extended family members, and more! If you identify as a caregiver, you can participate! The survey will take about 15 minutes. Its 100% online, so you will need access to the internet. Upon completion of the survey, enter to win one of 30 $25 Amazon gift cards
There are no direct benefits for you to participate, but the information collected from this study may help to provide information about the behavioral service needs of children with PWS, and their families.
Questions?
Contact Annette Griffith or Kasey Bedard at The Chicago School of Professional Psychology
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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.