Your voice matters! Florida has the opportunity to lead the way in early genetic screening for rare diseases like Prader-Willi syndrome (PWS). By supporting the Sunshine Genetics Act (HB 907 / SB 1356), we can help ensure that newborns receive critical genetic testing, leading to earlier diagnoses and improved care for individuals affected by rare disorders. Early detection means early intervention – changing lives and reducing long-term health complications.
Why This Matters for the PWS & Rare Disease Community
Prader-Willi syndrome is a rare genetic disorder that affects 1 in 15,000 births and requires early intervention to improve health outcomes. Unfortunately, delayed diagnosis can lead to severe medical complications, developmental challenges, and significant financial burdens for families. A study by the EveryLife Foundation estimates that avoiding diagnostic delays could save between $86,000 and $517,000 per patient in healthcare costs and productivity losses.
Beyond improving individual outcomes, passing the Sunshine Genetics Act will position Florida as a national leader in genetics, gene therapy, and precision medicine. This legislation offers new hope to families navigating the challenges of rare diseases, ensuring they receive the care and resources they need from the start.
How You Can Help
We need Florida residents to contact their state representatives and senators to urge them to support the Sunshine Genetics Act! You can take action in two ways:
1️⃣ Send a Pre-Written Letter – Click here to send a letter to your legislators in just a few minutes.
2️⃣ Use the Letter Templates Below – If you prefer to mail or email your representatives directly, you can copy and personalize one of the following templates:
PWS-Specific Letter
“Dear Representative/Senator ____________,
As your constituent, I am writing to express my heartfelt support for the “Sunshine Genetics Act,” introduced as House Bill 907 by Representative Adam Anderson and Senate Bill 1356 by Senator Colleen Burton. This visionary legislation promises to position Florida as a national leader in genetics, gene therapy, and precision medicine, offering hope and tangible benefits to countless families affected by rare genetic disorders.
Prader-Willi syndrome is a rare, complex genetic disorder affecting approximately 1 in 15,000 births. It manifests with a range of physical, cognitive, and behavioral challenges, including hypotonia, developmental delays, and a chronic feeling of insatiable hunger leading to life-threatening obesity if not managed. Early diagnosis and intervention are crucial in managing PWS effectively, allowing for timely therapeutic strategies, nutritional guidance, and support services that significantly improve quality of life.
The establishment of a genetic testing newborn screening program, as outlined in this bill, is a monumental step toward early detection and intervention, which are vital in the management of rare diseases like PWS. The economic implications of delayed diagnosis are substantial. A study by the EveryLife Foundation for Rare Diseases revealed that timely diagnosis and screening could shorten and possibly eliminate the diagnostic odyssey, significantly reducing the cost impact of rare diseases for individuals, families, and the healthcare system. The study estimated that avoidable per-patient medical costs and productivity losses attributable to delayed diagnosis ranged between $86,000 and $517,000 per patient.
By investing in early genetic screening and fostering a collaborative network among top state universities for research, diagnosis, and treatment, Florida is not only advancing science but also profoundly changing lives. Early diagnosis facilitates timely interventions that can prevent irreversible disease progression, improve health outcomes, and reduce the long-term economic burden on families and the healthcare system.
I wholeheartedly support the “Sunshine Genetics Act” and stand ready to collaborate in any capacity to ensure its successful implementation. Together, we can create a future where early diagnosis and intervention are the norms, leading to better health outcomes and enhanced quality of life for all.
Thank you for your dedication to this critical cause.
Sincerely,
[Your Name]
Rare Disease General Letter
“Dear Representative/Senator ____________,
As your constituent, I am writing to express strong support for the Sunshine Genetics Act (HB 907 / SB 1356). This crucial legislation would position Florida as a national leader in genetics, gene therapy, and precision medicine, offering early diagnosis and life-changing interventions for individuals and families affected by rare genetic conditions.
There are now over 10,000 known rare diseases, impacting an estimated 30 million Americans—many of whom are children. For the majority of these conditions, early diagnosis is essential in providing access to available treatments, therapies, and supportive care that can significantly improve quality of life and, in some cases, even extend lifespan. Yet, too often, families experience what is known as the “diagnostic odyssey”—a lengthy, stressful, and costly journey of years spent searching for answers while irreversible damage occurs.
The Sunshine Genetics Act takes a bold and necessary step forward by establishing a genetic testing newborn screening program, helping to identify rare diseases earlier and reduce the time it takes for families to receive a diagnosis and support. According to research from the EveryLife Foundation for Rare Diseases, avoiding diagnostic delays could save between $86,000 – $517,000 per patient in medical costs and lost productivity, easing the financial burden on families and the healthcare system alike.
By investing in early genetic screening and fostering a collaborative network of top state universities for research, diagnosis, and treatment, Florida can lead the way in advancing science, improving lives, and reducing healthcare costs. This legislation is an investment in the future of medicine—one that will allow for timely interventions, better patient outcomes, and groundbreaking progress in rare disease research.
I strongly urge you to support and advocate for the passage of the Sunshine Genetics Act (HB 907 / SB 1356). The rare disease community stands ready to collaborate in any capacity to ensure its successful implementation. Together, we can create a future where early diagnosis and intervention are the norm, offering renewed hope to millions of families.
Thank you for your leadership and dedication to this critical cause.
Sincerely,
[Your Name]
Let’s Make a Difference!
This bill has the power to change lives. Contact your state representatives today and urge them to support the Sunshine Genetics Act (HB 907 / SB 1356). Whether you send a pre-written letter or personalize your own, every message helps move us closer to a future where early diagnosis and intervention are the norm.
Together, we can help pass this bill and bring hope to Florida’s rare disease community!
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.