March 26, 2025 Update:
Dear Friends,
I’m reaching out about the federal NF research funding situation and want to acknowledge the concerns and frustrations many of you have shared. I want to assure you that our entire team is working tirelessly—around the clock—to secure a way forward for NF research and care.
From day one, we pursued every available avenue on Capitol Hill to protect funding through the CDMRP (Congressionally Directed Medical Research Programs). We’ve been working directly with decision-makers and committee staff, leveraging longstanding relationships and exploring every possible path to preserve this vital support. While we were advised to prioritize personal strategic outreach to key decision-makers rather than public outreach, we are now turning our full attention to identifying new solutions that will preserve the remarkable progress and momentum we’ve built together – including pursuing other potential sources of federal support.
We’re also proud to be working in close partnership with the Defense Health Research Consortium (DHRC) – a coalition of organizations across disease areas, including many focused on NF – joining forces to protect and restore this critical funding.
We launched a letter-writing advocacy platform that makes it easy for you to contact your representatives and make your voice heard.
Advocacy Update Webinar Recording – March 31, 2025
We hosted a community webinar to share more about our efforts and answer your questions. Watch a recording of the webinar.
It is crucial, especially at this juncture, that we remain focused on what we all want: progress, hope, and a future with better treatment options for everyone living with NF. While the impact of this funding loss won’t be felt until 2026, we must act now to ensure NF research continues uninterrupted and prevent long-term consequences.
Please know that we remain wholly committed to procuring this funding and, most importantly, to each of you. We are working every possible relationship in Washington, D.C., to plead our case, and I’ve been speaking directly with everyone who can help in any capacity.
What matters most is our shared drive and commitment to protecting and advancing NF research. Let’s use our collective strength and unity to ensure our voices continue to be heard. We’ve fought too hard to stop now.
I promise to keep you regularly informed as we press forward with unwavering determination. Thank you for your trust, your patience, your faith in our mission, and your incredible support during this critical time.
With gratitude and relentless dedication,
Annette
P.S. Thank you for joining in this fight. Please follow this progress at ctf.org/advocacy.
March 19, 2025 Update
Dear NF Families and Friends,
Last night, we received devastating news: NF research funding through the Congressionally Directed Medical Research Program (CDMRP) has been eliminated for Fiscal Year 2025. Last year, this federal program provided $25 million for NF research. NF is not alone in this setback; other disease areas also saw funding cuts, but that does not make this any less of a loss for our community.
The reality is that this does have a massive impact on NF research. CDMRP funding supports studies that bring us closer to treatments. You must know that (1) we are doing everything in our power to work with decision-makers in Congress to rectify this issue and to find the funding elsewhere in the budget; and (2) we will never stop pushing forward in our common goal of finding treatments and ultimately a cure for those heroes living with NF and their families – our family.
We will continue to update you as soon as possible with recommendations on the most impactful actions you can take. Of course, if you have strong relationships in Congress or in the Department of Defense, please reach out to us directly to join our efforts.
Just like with everything in life, setbacks do not define us – how we respond does. We will continue to fight alongside the rare disease community and of course, specifically for the NF community in this critical time.
With shared determination,
Annette Bakker
Chief Executive Officer
Children’s Tumor Foundation
Gabe Groisman
Chairman
Children’s Tumor Foundation
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.
