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 leadership academy to a “select group of young adults in the rare community.” This 8-week online course teaches the Rare students about “the roles and opportunities for patient representation in policy-making, drug development and the regulatory process and the steps it takes to enter those roles.”There were many great topics covered in the 8 weeks but some of the highlights according to Justice were Federal Advocacy 101, The basics of Policymaking and Patient Representation roles. At the end of the course, each student was required to present a Capstone project on a job they wish to apply for. Each Capstone included a resume with a cover letter and a 5-minute presentation explaining how “their patient perspective is vital in the role they chose”.Justice plans on taking what she has learned to make a difference not only for the PWS community but for all rare diseases.
Quotes taken from the EveryLife Foundation website. Click here to visit their site.
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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.