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PWS Awareness Month
Throughout May, Help Shine a Light on Prader-Willi Syndrome Awareness Month!
The month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Throughout this email, we share several different ways YOU can make an impact!
PWSA | USA has created several graphics designed to help you raise awareness on social media and in your community. From profile photos to flyers and a printable yard sign, this toolkit equips you with everything you need to make a difference. Let’s unite to educate others about PWS and show our support for those living with this rare genetic disorder. Together, we can make a meaningful impact and foster greater understanding and acceptance. Visit PWSA | USA’s website by CLICKING HERE to access the toolkit and start spreading awareness!
Our Spotlight on Hope series strives to share and celebrate the successes of our loved ones. No success is too small! Whether they took their first steps, had a great time at the school dance, made a shot in a basketball game, or are working towards a goal, we want to celebrate it all. If you’d like to honor your loved one and share their success story with the PWS community, please fill out our Spotlight on Hope form at https://www.pwsausa.org/get-involved/share-your-story/. We’re looking forward to celebrating with you!
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.
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.
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.
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.
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.