NF Research Highlights and Milestones

NF research has advanced quickly over the last 30 years as CTF has grown into a leading advocate of the disorder. Learn about the history of NF and CTF as we've advanced toward treatments and a cure.


  • The Children’s Tumor Foundation (formerly the National Neurofibromatosis Foundation) is founded
  • First NF Clinic opens in New York City.
  • Foundation’s Research Advisory Board is formed.
  • NF Clinics open at several US institutions.

  • Foundation launches first NF research program in the world; awards first research grants.
  • Convenes first major international scientific conference on NF.
  • First full-time staff hired.
  • NF1 and NF2 genes are mapped to their respective chromosomes; NF diagnostic criteria established.
  • Development of first diagnostic DNA, prenatal, and pre-symptomatic testing for familial cases of NF1.

  • Comprehensive international database on NF is developed.
  • NF1 gene and neurofibromin, the gene product it encodes, are discovered.
  • Mutual Analysis Consortium for NF1, a worldwide collaborative effort to speed the detection of mutations in the NF1 gene, is established.
  • Discovery of the NF2 gene and merlin/Schwannomin, its gene product.
  • National multi-center trials in NF1 begin.

  • Direct gene testing for NF1 and NF2 is made available.
  • Use of a molecular approach to unravel the connection between NF and learning disabilities.
  • Diagnostic and management criteria for NF1 and NF2 clinical care are expanded and published in the Journal of the American Medical Association.
  • Foundation launches NF Camp.
  • Launch of NF Prize for Research Ideas to attract young scientists to NF.

  • Nature reports on Foundation-funded research regarding the biological cause of learning disabilities in NF1 patients.
  • Foundation-funded scientist publishes article in Science providing insights about the structure and behavior of NF tumors in mice.
  • The first Medical Symposia for physicians is held in Japan and Korea.
  • Congress appropriates a record $25 million for NF research via the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP).
  • Schwannomatosis is added to the Foundation’s mission as the third form of NF.
  • First Schwannomatosis Award is offered

  • Five-year strategic plan established to accelerate the pace of NF research.
  • Launch of Drug Discovery Initiative (DDI) to fund preclinical screening of candidate NF drugs.
  • Launch of National NF Clinic Network.
  • Foundation commences a six center NF Preclinical Consortium (NFPC).
  • Foundation funds its first clinical trials.
  • Avastin shows promise in small phase II trial shrinking vestibular schwannomas.
  • Lovastin phase II trial for learning disabilities begins.
  • NFPC commences collaborations with Genentech and Avila Therapeutics and expands existing drug trial with Novartis.
  • Testing of pain-targeted drugs from AstraZeneca and Pfizer in schwannomatosis mouse.

  • NF Clinic Network grows to 44 locations seeing nearly 10,000 patients.
  • Drug Discovery Initiative pipeline reached 44 projects; Foundation investment of $1M attracts $5M in follow-on funding from industry and government.
  • NFPC II Phase II launched. Total project $8.5 million from 2007-2013.
  • New five-year strategic plan establishes priorities to build on the progress of the last five years.

  • NF Registry is launched.
  • A record number of 11 Young Investigator Awards funded.
  • Clinical Research Awards increased to $150,000.
  • NFPC reaches over 40 preclinical trials completed or in process.

  • NF Biobank launched – first 52 dermal neurofibromas collected.
  • 14 clinical trials informed or initiated through work of NFPC.
  • 2,500 patients enrolled in NF Registry. • Partnerships with industry established to accelerate path to clinic.
  • Creation of disease maps to increase transparency of funding – visualize future areas of research funding.

  • Synodos for NF2 is launched, an integral driver in the Foundation’s collaborative strategic business model
  • Synodos for NF1 is launched.
  • The joint NF Forum and NF Conference, with keynote speaker Dr. Francis Collins, NIH Director, is the largest NF gathering of researchers, doctors and patients ever.
  • Foundation expands collaboration with Thomson Reuters and announces partnership with the Alzheimer’s Drug Discovery Foundation • New Study of MPNST combination therapy based on CTF research
  • NF Registry grows to 4,300 participants
  • Innovative Business Opportunities in NF meeting is held, with participation from industry, academia, and media.
  • NF Clinic Network expands to 46 locations

Contact Us

Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633