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The Children’s Tumor Foundation (CTF) is a nonprofit organization that funds research into neurofibromatosis (NF). CTF's mission is to find treatments for NF through support of research. (Neurofibromatosis is the term for three distinct genetic disorders: neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis.)

The foundation is incorporated as a not-for-profit corporation under the laws of the State of New York and is a 501(c)3 charitable organization registered in all 50 states, with active chapters and affiliates in 28 states. Update number of affiliates

The foundation works with patients, their families, researchers, clinicians, and industry, emphasizing collaborative approaches to developing new treatments. . In 2012, the foundation devoted 79% of its budget to programs, 8.8% to administrative expenses, and 12.1% to fundraising.

Programs
CTF and its regional chapters run events to raise funds for and promote awareness of neurofibromatosis. Events include Racing4Research (professional auto racing events), NF Walks, NF Endurance (running, biking, and swimming), and the mid-February Cupid's Undie Run.

These efforts support programs like: NF Camp for NF patients 12 to 21 years old at Camp Kostopulos (a 25-acre camp for people with disabilities, located outside Salt Lake City, UT); the annual NF Forum (a week-long meeting for patient and family support); and the NF Conference (a research and clinical symposium founded in 1987 that now attracts more than 300 scientists for four days of technical sessions).

The foundation's scientific and clinical programs increasingly emphasize communications among stakeholder groups : patients and their families, basic researchers, clinicians, and commercial drug developers.

Initiatives that bring patients and clinicians together include:


 * NF Clinic Network. Founded in 2007 to establish a network of clinics to standardize and improve NF clinical care in the United States. By 2014, there were more than 40 affiliates in the United States.


 * NF Registry. In 2012, CTF opened the NF Registry, "a database of patient-reported experiences of living with neurofibromatosis. It also serves as a referral source for clinical trials." The registry allows patients with NF1, NF2, or schwannomatosis (or their guardians) to register for participation in clinical trials and research studies. The NF registry helps researchers efficiently locate and enroll suitable study participants.  The registry is managed by Patient Crossroads, a third-party organization that, in 2014, managed registries that “cover more than 250 diseases and are used by participants in more than 74 countries.” . The NF Patient Registry is one of several patient registries that deal with the disorder. Another is the Washington University Neurofibromatosis Registry, which focuses on NF1.


 * NF Biobank. A collection of tissue samples contributed with informed consent by NF patients, the NF Biobank (projected to begin operation in 2014) provides material for scientific study of the causes and possible treatments for the disorder.

CTF has provided grants for basic and clinical research since its founding in 1978. In recent years it has increased direct research grants and begun funding the construction of infrastructure to leverage direct grants and foster cross-disciplinary and cross-institution cooperation. Grant programs include:


 * Synodos Grants.  Funding or participants in the CTF’s Synodos consortium, promoting "collaborative, interdisciplinary translational research" among researchers at multiple institutions. The grants encourage a systems-biology approach.


 * Young Investigator Awards. Two-year “seed” awards to help early-career scientists establish themselves as independent researchers. For the two decades before 2005, the YIA program was CTF’s only continuing grant program.


 * Drug Discovery Initiative. Grant support to help researchers screen candidate drugs for treating NF.


 * Clinical Research Awards. Support for clinical researchers conducting early-stage clinical tests or designing clinical trials for treatments or diagnostic tools.


 * NF Preclinical Consortium, a network of investigators testing candidate drug therapies in non-human models for NF1 and NF2.


 * In addition to its own programs, CTF supports collaborations such as the REiNS (Response Evaluation in Neurofibromatosis and Schwannomatosis) Initiative, and consensus panels developing guidelines for diagnosing or treating NF1, NF2, and schwannomatosis.