By Stacy Ward
May is National PWS Awareness Month! PWS Awareness Month came to be thanks to the efforts of Amy Porter and Prader-Willi California Foundation members, Tom and Renay Compere, who brought the syndrome and the needs of the PWS community to the attention of Republican Congressman Ed Royce and Democratic Congresswoman Jane Harman. The latter two cosponsored the original House Resolution which passed in December 2009, and then in the Senate on May 27, 2010, thereby establishing National Prader-Willi Syndrome Awareness Month.
Prader-Willi syndrome is one of over 7,000 rare diseases. This means many (if not most) physicians, educators, and therapists are unfamiliar with the syndrome. The same is generally true of family, friends, and neighbors who won’t innately understand the complexities of caring for and supporting someone with PWS. That’s why May Awareness Month is so important…Awareness is the first step towards creating a more understanding and supportive environment for individuals and families living with PWS. PWSA (USA) is committed to raising awareness about Prader-Willi syndrome and the unique needs of the PWS community.
With your help, we can raise awareness about Prader-Willi syndrome by spreading information and education across the world until everyone understands how the can help empower those living with PWS. Here are some ways you can get active in the awareness movement and help us save and transform lives:
- Host an event (bowl-a-thon, 5k, kickball tournament, etc.) to raise funds for your state chapter or PWSA (USA)
- Make an appointment to speak with local government officials
- Contact your representatives and teach them about PWS
- Organize a training session to teach local first responders about how to care for individuals with PWS
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.