We’ve made it easy to contact your representative about a very important issue affecting the PWS community. Read below to learn about this issue then click the button at the bottom to be taken to a pre-written letter. Fill in your name, street address, zip code, phone, email and hit send.
The Biggest Threat to PWS Research Today: Why We Must Act Now
For years, medical research has been a bipartisan priority—improving health and driving economic growth. But recent actions from the new administration are undermining the entire medical research system, putting crucial PWS research at risk. This is not an attack on the new administration, this is a discussion on proposed policy changes that are already having a significant impact on PWS research and development.
We need to work from a place of FACTS not a place of FEAR. Concerns about the intervention are not a matter of politics. They are about national and ultimately global health; about American economic strength; competitiveness with our trading rivals; and about our collective future.
The recent $4 billion cut to clinical trial funding nationwide is threatening essential research. Indirect cost reimbursements to universities have been slashed from 30-60% to just 15%, forcing institutions to cover expenses like lab equipment, utilities, and research infrastructure on their own.
For large research universities, this means up to $100 million in lost funding, creating a devastating ripple effect. With approximately 50 universities impacted, these cuts will significantly slow down—or even halt—critical medical research, including PWS clinical trials.
Furthermore, these funding reductions will make it increasingly difficult to employ the clinicians needed to run clinical trials, leading to delays or cancellations of essential research and limiting access to potential treatments for the PWS community.
Why This Matters to the PWS Community
1.Canceled and Delayed Grants Mean Fewer Clinical Trials
- -These disruptions slow funding decisions, delaying research and pushing back the timeline for new treatments.
- -Advocacy organizations like ours could lose up to 40% of our purchasing power, severely limiting our ability to support clinical trials and research initiatives. The cuts to NIH funding impact advocacy organizations like ours in several ways, leading to a loss of purchasing power and limiting our ability to support clinical trials and research initiatives. By reducing grant opportunities, increasing our research costs, limiting partnerships/matching funds and increasing administrative/operational costs, the combined effects of these funding constraints will mean fewer PWS-focused clinical trials, delays in drug development, and setbacks in critical research efforts—ultimately slowing progress toward new treatments.
2.The Future of Decentralized Trials—A Lifeline for PWS Families—Is at Risk
- -Many PWS families struggle with the burden of travel for clinical trials. Decentralized trials (which allow for home-based participation) are crucial for ensuring access to research.
- -An NIH-funded workshop designed to advance decentralized trials was abruptly canceled—undermining efforts to make trials more accessible for our community.
3.Slashing University Funding Could Halt Research Completely
- -NIH is cutting $4 billion in indirect cost funding from universities, which is essential for sustaining medical research infrastructure.
- -Universities depend on these funds to support critical research expenses—scientists, lab materials, clinical trial oversight, and patient safety.
- -Without this funding, universities will be forced to slow down or even stop research altogether, making it nearly impossible to advance PWS clinical trials.
What This Means for You
These decisions aren’t just bureaucratic changes—they have real and immediate consequences for families fighting for PWS treatments. If these cuts are not reversed:
- -Clinical trials may be delayed or canceled, making it harder to bring new treatments to families.
- -Universities may be forced to scale back or shut down PWS research programs.
- -Rare disease families will lose critical advocacy and inclusion in research, undoing years of progress.
Our Call to Action: The PWS Community Must Speak Up
The future of PWS research is on the line, and we must act now to protect it.
✅ Stay Informed: Educate yourself and others on how these policy changes affect PWS research. ✅ Raise Awareness: Share this message with your networks to amplify our community’s voice. ✅ Advocate for Change: Contact your representatives and urge them to support policies that preserve and expand funding for rare disease research.
Hope Begins with Us
Our community has fought hard for every advance in PWS research. We cannot afford to lose ground now.
Join us in this fight. Speak up. Take action. Demand that medical research remains a priority.
Together, we can ensure that the progress we’ve made continues—because the lives of our loved ones depend on it.
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.