As we wrap up 2022, we want to recognize the amazing advocacy efforts our community helped us carry out over the past year. Your support, involvement, and VOICE led to many accomplishments, including taking our advocacy efforts to new heights (literally) and laid the foundation for more incredible work to continue in 2023.
PWSA | USA has defined itself as prominent and effective organization, which works to meet the unmet needs of our community. From our inspiring and empowering volunteer summit to our overwhelmingly successful first-ever Washington, D.C. fly-in, PWSA | USA has expanded the reach of our organization, actively engaged with the FDA and established a presence for the PWS community on Capitol Hill.
In 2023, PWSA | USA will once again elevate our advocacy by continuing to foster our relationships with members of congress. We will push to secure the addition of PWS to the Peer Reviewed Medical Research Program (PRMRP) list of topic areas for research funding, continue to work on ensuring PWS is recognized on the state level throughout the country, and expand our training/educational programs to include podcasts and social media events for the PWS community. Finally, by working with the FDA to host the PWS communities first Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting, PWSA | USA will help ensure that PWS patient experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. Thank you to all of the amazing members of our PWS community who have worked tirelessly to make 2022 a success… Get ready 2023, here we come!
Stay tuned for registration information to the kickoff of our 2023 Advocacy in Action webinar series, which will take place on January 17, 2023 at 8PM EST.
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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.