Children's Tumor Foundation

The Children’s Tumor Foundation (CTF) is the leading non-governmental funder of research into Neurofibromatosis (NF). The mission of CTF is to find a cure to NF through support of research. Neurofibromatosis is the term for three distinct genetic disorders: Neurofibromatosis 1, Neurofibromatosis 2 and Schwannomatosis. NF affects all races, ethnic groups and both sexes equally.

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The Foundation is incorporated under the non-profit laws of NY and is a 501(C)3 organization. The Foundation is registered in all 50 states, with active Chapters and Affiliates in 28 states.

History

Founded in 1978 by Dr. Allan Rubenstein, a neurologist with an interest in neurofibromatosis, Lynne Courtemache Shapiro, a Registered Nurse who has NF1, and Joel Hirschstritt, Esq., who agreed to assist them on a pro bono basis to establish the Foundation in New York City. Dr. Rubenstein served on the Board of Directors and as Chairman of CTF's Medical Affairs Committee from inception until 2003. He continues his clinical practice, and is the founder, President & CEO of NexGenix Pharmaceuticals, a biotechnology company engaged in drug development for NF. In recognition of his long and distinguished service, he has been named Director of Medical Affairs, Emeritus.

Selected Milestones:

1980 - Established Research Advisory Board (RAB).

1984 - Launched first NF research program in the world and awards first research grants.

1985 - Convened the first major international NF scientific conference.

1987 - NF diagnostic criteria, nomenclature and management guidelines for NF1 and NF2 are established by NIH

1990 - The NF1 gene and neurofibromin, the gene product it encodes, are discovered.

1993 - The NF2 gene and merlin/schwannomin, its gene product, are discovered.

1994 - Website, originally www.nf.org, now www.ctf.org, is launched.

1997 - NF International Summer Camp for teens is launched.

2000 - Development of new and powerful mouse models for NF allowing gene deletion in specific tissues.

2004 - Funded the establishment of The NF Project to investigate the effectiveness of existing drugs in treating NF.

2005 - Hired first Chief Scientific Officer for research and clinical programs.

2006 - Established Drug Discovery Initiative (DDI) and pilot program for NF Clinic Network.

2007 - Expanded DDI from a pilot program to a $4M four-year preclinical drug screening consortium. Launched $1M clinical trials funding program

Programs

a. The Young Investigator Award (YIA). The YIAs is the cornerstone grant of CTF and has been since inception in 1985. Offering up to $90,000 over two years, they are open to pre- and postdoctoral scientists investigating novel ideas in basic, translational and clinical research in NF. In addition to the discoveries made through this program, it encourages young scientists to pursue careers in NF research. Many of the senior researchers in NF today were recipients of our YIAs early in their careers. Discoveries made through the YIA program are often pursued with follow-on grants from larger funding sources such as the National Institutes of Health and the Congressionally Directed Medical Research Program. The YIA program is advertised in major scientific journals in the fourth quarter of each year. Applications are due by March 31. CTF’s Research Advisory Board (RAB) peer reviews the applications and makes recommendations for funding to the Board of Directors. Awards are announced at The NF Conference held in early June.

b. Drug Discovery Initiative (DDI). Initiated in 2006 to fill a gap in NF research identified by advisory Boards. Pharmaceutical companies are more likely to invest in NF research if there is preclinical data available. The DDI funds & facilitates preclinical screening to develop this data with two components: Grants of $10,000 for in vitro screens and $25,000 for in vivo screens of candidate NF therapeutics.

In addition, the DDI program includes an online Toolbox hosted on the CTF website. It is a condition of funding that researchers make their tools (candidate drugs, animal models, cell lines etc.) publicly available for collaboration with other researchers.

c. Children's Tumor Foundation NF Clinic Network (CTF-NFCN). This is a new program that completed its pilot phase in 2006 and is being rolled out broadly in 2007. In CTF 2005 began to address the need for national guidelines for NF clinical care in the US. The CTF Clinical Care Advisory Board (CCAB) has developed NF Clinic Guidelines that recommend what types and level of care an individual should expect to receive when visiting an NF Clinic.

NF Clinics adopting these guidelines may apply to become members of the CTF-NFCN. This program is intended to standardize and improve NF clinical care nationally across the US. Members of the CTF-NFCN are expected to submit data to the NF Database, the Foundation's NF patient registry, and all NF clinics are encouraged to contribute to this valuable resource which can be used for clinical trials & research. Members are also eligible for the CTF Clinic Coordinator program, which will support a part or full-time coordinator for the clinic with funds that have been raised locally by our Chapters and Affiliates.

d. NF Conference. In 1985, CTF convened the first ever scientific meeting focusing on neurofibromatosis. This meeting has grown into the preeminent annual meeting of NF scientists and clinicians worldwide. In 2007 the meeting was held in Park City, Utah, and was attended by over 200 researchers from 11 different countries. The NF Conference is a major part of CTF efforts to encourage research and foster collaboration in the scientific community.

e. Preclinical Drug Screening Consortium. $4M 4-year multi site preclinical drug screening consortium to accelerate the identification of candidate neurofibromatosis drug therapies and their progress to the clinic.

f. Clinical trials. $1M to support pilot-stage clinical trials of the most promising candidate neurofibromatosis therapeutics.

Notes

The Foundation hosts discussion boards and chat rooms on their website, as well as extensive information on clinical and research topics, local activities and other programs.