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15 Ways to Get Involved
- Heart for Hope Campaign – make clickable so the PDF opens in another screen (attached)
- Wear your PWS gear with pride
- Participate in Chalk Your Walk – add image that is attached
- Get Social – Share your #HopeIsHere story on Social Media
- Make a donation to the Family Support Campaign
- Update your PWS Global Registry surveys https://pwsregistry.org/
- Attend a PWSA | USA webinar
- Building Well-Being Through Positive Relationships https://us02web.zoom.us/webinar/register/
- Unhealthy Relationships with Food https://us02web.zoom.us/webinar/register/
- Talking with your loved one about their diagnosis (registration link to come by end of day)
- Share PWS educational information with your local school district / IEP team
- Share PWS medical information with your local hospital / healthcare providers / urgent care
- Support PWSA | USA through Amazon Smile
- Educate your representatives about PWS (link to come by end of day)
- Add PWSA Awareness frame to your Facebook profile picture
- Change your Facebook Cover Photo to the PWS Awareness cover photo (in toolkit)
- Share a story about someone who helped you on your PWS journey
- Complete the coloring sheets found in the toolkit with your loved one and share on social media
PWSA Resources
PWS Awareness Toolkit
- The Facebook Profile Frame image – Search PWSA | USA PWS Awareness
- Coloring Sheets
- The information for Schools
- The information for Healthcare providers
- Quick Fact Sheet
- For Healthcare Providers
- For Educators
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.