Contributed by Vonnie Sheadel
Washington and Oregon Chapters Creating Interactive Map for PWS Families
PWSA of Oregon and Washington are in the process of developing a Google map for PWS families to find each other in the Pacific Northwest. It will be a safe, secure and easy way for families to locate others in their area. Only PWS families will be able to access the map. They can search by city and age group. Private information will not be shown. Participants can message each other through the map program and decide what personal information they want to share. They can then decide if they want to continue to communicate through other means.
We expect to include a way to add verified PWS professionals, clinics, residential providers, etc. Participants can see them, but those businesses will not be able to access information about families.
We hope to have it ready this Spring.
How It Will Work
We will send out a notice for your publication, Facebook pages, PWSA websites, email contacts, etc. Families who are interested can request a link. Once confirmed that they are a PWS family, they will get a link via email. It will take them to a short form to complete that will put themselves on the map. It will include their city, PWS age group, etc. The map will not show their personal information. They can message other people via the map to make connections. Afterwards, they can give them their contact information if they choose to. They will be able to share whatever personal information they want to between each other outside of the map/message system.
Contact
If you live in Oregon or Washington and would like to learn more, please contact Vonnie at vsheadel@gmail.com.
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.