Advocacy in Action Heading to Rare Disease Week
February 29th, Rare Disease Day, is just around the corner! PWSA | USA and PWS advocates will be meeting in Washington, D.C. to make their voices heard at Rare Disease Week. To date, there are over 10,000 rare diseases, 95% of which are without FDA approved treatments. 70% of genetic rare diseases start in childhood...
Empowering Hope: Kayla Day’s Journey as a PWS Advocate
Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS. Contributed by Kayla Day After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The...
Awarding Advocacy
PWSA | USA Spotlight on Hope contributed by Kristi Rickenbach, Mom to Justice Justice, 20 living with PWS, has been a member of the Young Adult Rare Representative (YARR) since January 2023 and recently had the opportunity to learn more about one of the things she is passionate about, Advocacy.The EveryLife Foundation offers a YARR...
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.