Florida has officially launched the Sunshine Genetics Act, a first-of-its-kind initiative offering free, voluntary whole genome sequencing (WGS) for all newborns—and PWSA | USA was honored to stand at the forefront of this historic moment for rare disease families.
On July 9, 2025, leaders in science, medicine, and policy gathered at Florida State University’s Interdisciplinary Research & Diagnostic (IPRD) center to celebrate a transformational step in pediatric healthcare. Attending the event from the PWS community were Jennifer Garzia, Florida PWSA Chapter President and mom to Rocco (20, living with PWS) and Dorothea Lantz, PWSA | USA’s Director of Community Engagement and mom to Hunter (7, living with PWS).
As a leading national advocacy group for individuals and families affected by Prader-Willi syndrome (PWS), PWSA | USA has long championed early diagnosis, equitable access to care, and policies that advance research and innovation. Representing the voice of the rare disease community, Dorothea delivered remarks on behalf of the organization. Dorothea’s remarks reflected both the organization’s mission and her personal experience as the mother of a child living with PWS.
“Too often, families like mine face months—sometimes years—of unanswered questions and delayed diagnosis,” she shared during the event. “The Sunshine Genetics Act represents hope. It represents action. This profound piece of legislation will give families and doctors what they need most—the precious commodity of time.”
The initiative, sponsored by Representative Adam Anderson, (R-57), supported by state leaders and spearheaded by researchers like Dr. Pradeep Bhide of FSU, will position Florida as a national model for how genomics can transform early detection and treatment. As MSN and FSU News reported, this is a “bold move” that places rare disease care where it belongs—at the center of innovation.
With more than 1 in 10 Americans living with a rare disease, the potential impact of newborn sequencing is immense. For PWSA | USA, this moment reinforces the critical role advocacy plays in shaping policy and driving progress.
PWSA | USA proudly continues to lead national efforts to ensure that families impacted by PWS and other rare conditions are not only heard—but prioritized. The Sunshine Genetics Act marks a major milestone in this ongoing work, and the organization remains committed to advancing policies that bring earlier diagnoses, better outcomes, and stronger support for every child and family affected by rare disease.
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.