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.


1978First NF organization in the world, The National Neurofibromatosis Foundation, Inc. (NNFF) founded by Lynne Courtemanche, her physician Dr. Allan Rubenstein, and attorney Joel Hirschtritt, Esq.
1979First NF Clinic opens in New York City.
1980First NNFF Research Advisory Board is formed.
1982Comprehensive NF clinics open at several U.S. institutions.
1984First NF research program in the world; first grants are awarded.
1985First major international scientific conference on NF is convened.
1986First full time NNFF professional staff member is hired.
1987The NF1 and NF2 genes are mapped to their respective chromosomes.

NF diagnostic criteria, nomenclature and management guidelines for NF1 and NF2 established by NIH Consensus Conference convened at the request of the NNFF.
1988First diagnostic DNA, prenatal and pre-symptomatic testing for familial cases of NF1 developed.
1989First comprehensive, international database on NF developed.
1990Gene for NF1 and the gene product it encodes is discovered.
1991Mutation Analysis Consortium for NF1, a worldwide collaborative effort to speed the detection of mutations in the NF1 gene is established.

NNFF works with legislators in the US Congress to establish the US Army's NF Research Program.
1992International Neurofibromatosis Association (Luxembourg) formed.
1993NF2 gene and its gene product, are discovered.

NNFF International Clinic Network is established.
1994First national, multi-center clinical trials in NF1 begin.

First free Internet NF resource for healthcare professionals is launched.
1995Direct gene testing for NF1 and NF2 is made available.
1996First research project using molecular approach to unraveling the connection between NF and learning disabilities.

Dr. Rick Fehon of Duke University develops Drosophilia Melanogaster (common fruit fly) model of NF2.
1997Diagnostic and Management Criteria for NF1 and NF2 Clinical are reviewed and expanded, with results published in Journal of the American Medical Association.

Youth Programs developed, Kid's Council and NNFF International Summer Camp for teens.

Translational research phase begins with development of structure for clinical trials to test several compounds effectiveness in treating manifestations of NF1.

Dr. Andre Bernards of Massachusetts General Hospital Cancer Center and Harvard Medical School develops Drosophilia Melanogaster (common fruit fly) model of NF1.

1998Congressional funding for NF research via the U.S. Army reaches $11.3 million.
1999NF Prize for Research Ideas is launched. Designed to attract young scientists to the field.

Dr. Tyler Jacks of MIT develops first genetically modified mice which express the NF1 or NF2 mutations.
Institute for Clinical Trials and Technology Transfers is created and staffed with high-level medical professionals.
2001NNFF funded research at UCLA, and reported in Nature, by Dr. Alcino Silva, Dr. Rui Costa and colleagues takes important steps towards discovery of biological causes for learning disabilities in NF1 and developing treatment of LD in mice.
2002Congressional appropriations for NF research via the US Army reach $21 million. About 12,000 Foundation members and associates participate in the annual legislative process leading to these results.

Foundation creates collaborative ventures among the world's leading mouse model scientists working on NF. A similar worldwide collaboration of biochemists interested in NF is created by the Foundation. Task Forces comprised of clinical researchers continue to work on issues related to learning disabilities, bone abnormalities, neurofibromas, optic gliomas, cardiovascular abnormalities, and malignancies.

NNFF funded scientist, Dr. Luis Parada of University of Texas Southwestern Medical Center at Dallas, publishes an article in Science describing a new and powerful NF mouse model. With this model, scientists can delete any gene in any tissue of the mouse. This study provides new insights about the structure and behavior of NF tumors in mice and has the potential to provide new clues to preventing tumor cells from growing.
2003The NNFF celebrates its 25th anniversary.

NNFF organizes first NF Medical Symposia for Physicians in Tokyo, Japan and Seoul, South Korea.
2004The United States Congress appropriated $25 million for NF research via the US Army's Congressionally Directed Medical Research Program (CDMRP).

NF launched the "NF Research Project" to find drug treatments for the neurofibromatoses by partnering with pharmaceutical companies to investigate whether drug compounds that these companies have discovered will be effective in treating the NFs.

NNFF added Schwannomatosis to its mission as the third of the Neurofibromatoses after NF1 and NF2 and launched the Schwannomatosis Research Program.

NNFF changed its name to the Children's Tumor Foundation, with the tag line "Ending Neurofibromatosis through Research."

Foundation hires its first Chief Scientific Officer for research and clinical programs.

Foundation offers its first Schwannomatosis Award to stimulate research into this recently characterized form of NF.


The Drug Discovery Initiative is established by the Foundation to fund early stage screening of candidate drug therapies. Five DDI grants are awarded.

Foundation develops a pilot program for launching the NF Clinic Network

 2007Foundation-funded research published in Cell, one of the world’s premier research journals.

First 29 NF clinics become affiliated with the Foundation’s NF Clinic Network.

Foundation’s NF Preclinical Consortium establishes its first industry drug screening partner - Novartis.

CDMRP NFRP funded Phase II Clinical Trials Consortium opens Rapamycin trial for NF1 plexiform neurofibromas, with Lovastatin learning disabilities clinical trial to follow early 2009.

Early reports of Gleevec trial for plexiform neurofibromas shows promise. Massachusetts General Hospital researchers report positive findings in a small scale early stage clinical trial of Avastin for treatment of NF2 vestibular schwannomas.

Foundation’s Clinic Network expands to 38 Affiliate Clinics and plans for Patient Registry and BioBank.


NF2 clinical trials: drug Bevacizumab (Avastin) shows promise in small Phase II trial shrinking vestibular tumor, restores hearing in some patients. Published in New England Journal of Medicine, widely reported in popular press.

NF1 Lovastatin Phase II trial for learning disabilities commences.

Foundation funds first 2 pilot clinical trials: Phase Zero trial of Lapatinib forNF2 and Phase I trial of Sorafenib for NF1 plexiform neurofibromas.

Foundation funds development of first ‘schwannomatosis mouse.'


NF Preclinical Consortium commences drug trials in collaboration with Genentech and Avila Therapeutics and expands on existing drug trials collaboration with Novartis.

Through our Drug Discovery Initiative, the Foundation funds and facilitates the first ever testing of pain-targeted drugs (from AstraZeneca and Pfizer) in a schwannomatosis mouse.

The Foundation commences building NF BioBank and Registry with Genetic Alliance, to launch in 2011.

The 2010 NF Conference attracts record attendance of more than 300 researchers and clinicians, with new media components including blogging, tweeting, and webcasting, to help bring the information to the public.

Foundation partners with Texas NF Foundation in historic collaboration to support Young Investigator Award research.

The Foundation hosts NF2 clinician-research summit to evaluate progress in NF2 clinical trials and plan future trials.


NF Clinic Network grows to 44 locations seeing 10,000 patients.

Drug Discovery Initiative pipeline reaches 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 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.

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