Children's Tumor Foundation

Our Mission: Drive research, expand knowledge, and advance care for the NF community.

Our Vision: End NF.

Our Impact

The Children’s Tumor Foundation is revolutionizing the field of NF research and we’re proud of our recent achievements.

From 2010 to 2017, the Children’s Tumor Foundation’s primary objective has been to fill the clinical drug development pipeline. We strategically integrated our investments into this clinical pipeline, resulting in substantial accomplishments by the end of those five years:

  • Over 70% of all NF data in the world has been funded or co-funded by CTF.
  • CTF investments in the last five years ($26.6M) have already attracted $38.4M in follow-up funding from other sources.
  • CTF’s NF preclinical initiatives have generated 115 preclinical studies which have led to 16 clinical trials.
  • One of those trials (MEK inhibitor) resulted in over 50% of participants in a clinical trial seeing a reduction of at least 20% in their inoperable plexiform neurofibromas.
  • CTF created the NF Registry, which, with over 8,000 patients thus far, has been utilized 22 times to recruit patients to clinical trials.
  • The CTF Biobank collected more than 200 tissue samples and a body donation program is in place.
  • CTF built an innovative research model called Synodos, which attracted a “dream team” of scientists who pledged to work together collaboratively.
  • CTF launched an NF data hub, providing an open access data platform to all.
  • CTF collaborated with the National Institutes of Health (NIH), Congressionally Directed Medical Research Program (CDMRP), and Neurofibromatosis Therapeutic Acceleration Program (NTAP) to build a common grant repository for an easy visualization of the NF funding landscape.

The accomplishments of the past enable us to turn our eyes toward lofty goals. Our strategy for the next five years is to double the speed of clinical therapies to the clinic. We are advancing our Synodos consortia, increasing our NF data hub, growing the CTF Biobank, and expanding the NF Registry. With your help, our hope for the future includes partnerships with the pharmaceutical industry and the creation of an NF Biomarker Center to discover measureable biological indicators for NF.

We are planning for a future in which there are approved drugs for the treatment of NF. Thanks to you, we are advancing this vision!

Our Strategic Plan

Traditionally, the medical research community is incentivized to be competitive since their funding depends on their personal discoveries and publications. This system continues to delay the drug discovery process. 

Frustrated by this traditional model of drug research and driven by our belief in a culture of collaboration, the Children's Tumor Foundation formulated a strategic plan to accelerate the cure for neurofibromatosis by actively engaging all stakeholders in NF research: patients, scientists, doctors, pharmaceutical companies and the biotechnology field.

In a few short years, we have grown from a foundation that funds promising science to one that catalyzes the drug discovery process through a series of innovative processes, key partnerships and strategic investments.

The Children’s Tumor Foundation is so much more than a funder of scientific research. We have revolutionized the field of NF research, forging new pathways for one reason and one reason only: to benefit the millions of people living with NF.

Where the Money Goes

Funding for NF research, education, advocacy, and patient care comes from individual donors and organizations who support our mission.  We passionately pursue and take pride in our vision to end NF while maintaining the highest standards to allocate donor dollars wisely, consistently meeting or exceeding nonprofit watchdog standards.



To view the Foundation's financial statements, click here.