We want to address concerns about news of potential funding cuts to the Congressionally Directed Medical Research Programs (CDMRP), which have been an important source of NF research funding. We understand these reports are concerning and may create uncertainty. Please know that CTF is actively engaged at every level, working to protect the progress we’ve made together.
Our Approach
We are fiercely committed to protecting NF research funding. Our efforts include:
- Engaging key decision-makers from both parties and positioning NF research as a bipartisan priority
- Working with congressional allies who have historically championed NF research
- Leveraging our scientific successes to showcase NF’s impact across multiple diseases
- Developing contingency strategies to maintain research momentum
What This Means for Our Community
- CTF is closely monitoring developments and will alert you when specific actions will have the greatest impact.
- We are executing targeted approaches for both the House and Senate at key points in the budget cycle.
- Our immediate focus is on strengthening the case for NF research through multiple strategic channels.
- Your readiness to act when needed will be crucial.
You may see other organizations encouraging letter-writing campaigns. It’s always okay to engage in the way that feels right for you. No matter what, we’ll keep you informed on the most effective ways to make an impact.
Ways to Make an Impact Now
- Craft your compelling NF story—these personal experiences are powerful tools with decision-makers.
- Share your story: ctf.org/tellyourstory
- Sign up for alerts: ctf.org/newsletter
- Share NF knowledge with local healthcare providers at ctf.org/education
- Raise NF Awareness (local proclamations, media templates) with the NF Awareness Month toolkit: makenfvisible.org
- These local efforts bolster our NF message at all levels while national strategies unfold
- Applications from scientists for CTF funding have tripled this year
- Your contribution drives progress, regardless of what happens in D.C.
- This is the single most powerful action you can take right now
- Donate here: ctf.org/donate
Your support doesn’t just make a difference—it makes every difference. The strength of our community has always been our ability to overcome challenges and deliver results.
Thank you for your trust and commitment to #EndNF.
Update January 31, 2025:
CTF is steadfast in advocating for federal research funding that drives progress for NF patients. We meet regularly on Capitol Hill and work strategically to ensure NF research remains a priority. Thanks to these efforts, the Congressionally Directed Medical Research Program (CDMRP) has provided millions of dollars annually for NF research – supporting critical discoveries, strengthening the NF Clinical Trials Consortium, and getting treatments to patients faster.
We collaborate closely with the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the National Center for Advancing Translational Sciences (NCATS), and are actively building relationships with the Advanced Research Projects Agency for Health (ARPA-H), the Patient-Centered Outcomes Research Institute (PCORI), and the White House Office of Science and Technology Policy (WHOSTP) to expand research opportunities and funding.
Together with other key NF research funders and advocacy organizations, we work to ensure that NF remains a national priority, uniting efforts to drive scientific progress and patient impact.
Our approach is bipartisan, strategic, and focused on ensuring federal, donor, and investor dollars are used wisely – supporting high-impact research, avoiding duplication, and promoting collaboration, including open-data sharing. This strategy has delivered significant breakthroughs: including the FDA approval of Koselugo; Brigatinib’s advancement to Phase 2 trials due to our Synodos collaborative model; and the next phase of biomarker research to save lives and make NF more predictable. As a result, pharma and biotech interest in NF is surging, driving new partnerships that are accelerating drug development and expanding treatment opportunities.
While headlines may shift, our work remains steady. We are committed to protecting and growing NF research investment and ensuring these advances reach the patients who depend on them. Stay tuned – your support strengthens this effort every step of the way.
