The Clock Is Ticking
The Impact of the Federal Communications Pause and Federal Funding Freeze on Critical Medical Research
By: Elizabeth O’Brien | January 31, 2025
On behalf of CureNFwithJack, I would like to thank our constituents that have reached out to us over the last week to express their care and concern over the recent pause in federal communications, grant reviews and funding, and to ask how it affects the NF community that we serve.
Multiple NIH institutes conduct NF research. As a result of the broad federal communications, grant review and advisory panel meeting pause:
Critical meetings with doctors and medical professionals were postponed, and rescheduling them could take weeks or months.
National Institutes of Health (NIH) grant review panels were suspended, delaying crucial funding decisions and hindering the advancement of life-saving research. Many researchers depend on NIH grants to continue their work, and any interruption to this funding threatens progress.
Public communication from federal agencies, including the NIH, was paused, preventing scientists from sharing research findings, recruiting patients into clinical trials, and submitting studies for publication.
A hiring freeze and travel bans disrupted operations, preventing researchers from filling vital positions and attending key conferences and study sessions.
While these limitations have been eased in recent days, and are currently set to expire, the ripple effects of halting NIH’s operations, even for 10 days, are far-reaching. Pauses, delays, and disruptions can take weeks or even months to reset. Those lost weeks can ripple into months and even years of setbacks in the fight against NF, pushing life-saving progress further out of reach for patients and families. In short, every day counts.
Furthermore, while the federal funding freeze has been lifted - damage has been done. In less than 24 hours, the freeze caused significant confusion and further disruption to medical research, funding decisions and more—time that NF patients and families don’t have to waste. The clock is ticking. To be clear, the NF community is reliant on federal funding. The NIH conducts ground-breaking NF research and is a significant funder - including (but certainly not limited to) over $51 million in funding that led to our first FDA-approved drug for certain NF tumors. In addition to the NIH, one of the largest supporters of NF clinical research for many years is the Neurofibromatosis Congressionally Directed Medical Research Program (NF CDMRP), which is funded through the Department of Defense, with a budget of $25 million for just this year. Numerous NF advocacy groups, patients and nonprofits have advocated for decades on Capitol Hill for each and every dollar of this federal funding. Disruptions like this put critical research—and the hope of better treatments for NF patients and their families—at risk.
The past several days have been worrisome and concerning, but rest assured that CureNFwithJack remains steadfast in our mission, and will be monitoring the status of our research community closely. We are committed to supporting the incredible researchers and medical professionals who work tirelessly to improve the lives of those living with NF.
This situation underscores why advocacy and awareness are more important than ever. Your voice, your support, and your dedication to this cause ensure that NF research continues despite obstacles. The fight is hard, but together, we will continue on—because the NF community cannot afford to wait. We are forever grateful for your support.