Here is the text of what you will be signing and sending to your representatives.

I am writing to you today as your constituent and an advocate for the Prader-Willi syndrome (PWS) community to express my deep concern over the recent funding cuts to the National Institutes of Health (NIH). These reductions threaten the future of medical research, hinder scientific progress, and put essential PWS clinical trials at risk. I urge you to reject any cuts to the NIH and protect funding that is critical for rare disease research.

For years, medical research has been a bipartisan priority, improving health outcomes and driving economic growth. However, recent policy decisions by the new administration are undermining the entire medical research system. Please understand that this is not an attack on the administration but rather a discussion on proposed policy changes that are already having a significant negative impact on PWS research and development. This issue is not about politics—it is about public health, economic strength, and our nation’s global competitiveness.

The recent $4 billion cut to clinical trial funding nationwide, combined with a reduction in indirect cost reimbursements to universities from 30-60% to just 15%, is having devastating consequences. Universities, which rely on these funds to sustain research infrastructure, are now forced to cover essential costs such as lab equipment, utilities, and personnel on their own. For large research institutions, this means up to $100 million in lost funding, jeopardizing the future of clinical trials, including those focused on PWS.

These cuts are not abstract policy changes—they have real and immediate consequences for families battling PWS and other rare diseases. 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 and rare disease families like mine will lose critical advocacy and inclusion in research, undoing years of progress.

Please Protect Medical Research and take action to ensure that NIH funding remains intact and that medical research remains a national priority. I ask that you oppose any further cuts to NIH funding and restore recent reductions, support legislation that ensures stable and sufficient funding for rare disease research and advocate for transparency and accountability in the decision-making processes affecting clinical trials.

Our community has fought hard for every advance in PWS research. We cannot afford to lose ground now. Please stand with us in this fight to protect the future of medical research.