We are thrilled to share that Prader-Willi syndrome has been included in the Department of Defense’s (DOD) Peer-Reviewed Medical Research Program (PRMRP) in the 2026 Fiscal Year Defense Appropriations Bill. This is a MAJOR milestone for our community!
This inclusion, passed out of the Senate Appropriations Committee, is the result of tireless advocacy efforts that began with our very first PWSA | USA D.C. Fly-In in 2022. Since then, our advocates have shown up, spoken out, and shared their stories with lawmakers to push for this recognition. If signed into law, this designation will open new opportunities for federal research funding, scientific innovation, and much-needed progress in the fight against PWS.
We are so proud and grateful to every single advocate who helped make this happen. This is a testament to how much your voice is making a difference.
While this is a critical step forward, the bill still needs to pass the full Senate. We’ll be sharing next steps and how you can help keep up the momentum soon. In the meantime, we encourage you to read through the DOD Appropriations Bill draft at the button below. Scroll to page 228, paragraph 1, to see Prader-Willi syndrome listed under PRMRP!
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.