We are thrilled to celebrate a major step forward for individuals living with Prader-Willi syndrome (PWS) and the broader rare disease community in Illinois! On February 4, 2025, SB1651, filed by Senator Morrison, and HB2541, filed by Representative La Ha, were introduced—marking a critical move toward better support and services for those affected by PWS.
This achievement would not have been possible without the relentless advocacy of our Illinois advocates who include Conor Heybach (Age 44-living with PWS) Sandy Noel (grandmother to Bronson, age 3 living with PWS), Nicole Tingley (Administrator with DD Homes) and Amy and Chris Avart, parents to 6-year-old Esme living with PWS.
In addition to backing these bills, Senator Anderson, who represents Amy & Chris Avart, successfully introduced and passed Senate Resolution 25, which formally recognizes Prader-Willi syndrome. The Avart’s were present and testified before the Illinois Senate Health Committee on February 4th, sharing their family’s journey and the urgent need for legislative action to support individuals with PWS. Their powerful testimony was further strengthened by the unwavering support of their own state senator, Senator Anderson, who in addition to taking the initiative to file a resolution on behalf of PWS has signed on as a co-sponsor to SB 1651, making it bi-partisan legislation.
This is a monumental moment for the PWS community in Illinois, showcasing the power of advocacy, personal storytelling, and legislative partnerships. We are incredibly grateful to Senator Morrison, Representative La Ha and Senator Anderson, and all of our dedicated advocates who continue to push for meaningful change.
Let’s keep up the momentum! If you are an Illinois resident, we encourage you to reach out to your legislators and urge them to support SB1651, HB2541. To find your state legislators, please click HERE. Together, we can make a lasting impact for individuals and families affected by 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.
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.