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Children's Tumor Foundation
The Children's Tumor Foundation (CTF) is a 501(c)3 foundation dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis. Their four-part mission includes funding and driving research, strengthening patient support, establishing best practices in clinical care to foster greater access to quality healthcare to affected individuals and increasing public awareness of neurofibromatosis (NF). The foundation is incorporated in all 50 states with active chapters and affiliates in 28 states.

History
Established in 1978 as the National Neurofibromatosis Foundation by Lynne Ann Courtemanche, RN, neurologist Allen E. Rubenstein, MD and Joel S. Hirschtritt, Esq., the organization changed its name to Children’s Tumor Foundation in 2004. In the early years, the organization’s focus was on providing patient support and organizing the NF community. From the late 1980’s through the mid-1990’s, their aim incorporated discovering the genes that cause NF. CTF concentrated on translational research in 2005; in 2008 CTF also began to fund clinical trials. Recently, the organization has shifted from a more traditional funding model to a funder-partner model in an attempt to speed the drug discovery process.

Notable Achievements
The Foundation awarded its first grants in 1988, launching the first neurofibromatosis (NF) research program in the world. In 1985, they organized the NF Conference, the first major gathering of NF scientists and clinicians. In 1990 and 1993, respectively, labs funded by grants from the Foundation identified the genes for NF1 and NF2. In 1997, CTF launched an international summer camp for youth affected by NF. In 2006, the Foundation began funding a drug discovery initiative and piloted a program for a network of NF clinics. They began developing both a biobank and registry of patients with NF in 2009; the registry launched in 2012 and the biobank in 2013. CTF is the largest private funder of NF research.

Funding Model
In recent years, CTF has shifted its funding model from that of a more traditional non-profit organization to one more aligned with the venture capital approach advocated by the Milkin Institute’s FasterCures model. CTF now situates itself as a catalyst of NF research and has created active partnerships with patients, scientists, research institutions and both the biotechnology and pharmaceutical industries.

The Young Investigator Award (YIA)
Begun in 1985, this is a two-year award granted to post-doctoral and early-career scientists. It is intended to aid in establishing awardees as independent investigators. Many former awardees have become leaders in the field of NF research and within the clinical community.

Drug Discovery Initiative (DDI)
Begun in 2006, this award facilitates preclinical screenings to develop preclinical data of both in vitro and in vivo screening of NF therapeutics.

Children’s Tumor Foundation NF Clinic Network
To ensure the best clinical care for NF patients, CTF established the NF Clinic Network in 2007. This network currently includes 47 affiliate clinics throughout the United States, all of which adhere to current consensus clinical care guidelines for NF. Over 10,000 patients with NF are treated at these clinics annually.

NF Conference
In 1985, CTF convened the first-ever scientific meeting focusing on neurofibromatosis with the goal of encouraging research and fostering collaboration in the scientific community. Held annually, it is now considered the preeminent meeting of NF scientists and clinicians worldwide.

NF Preclinical Drug Screening Consortium (NFPC)
The NFPC was a $4M, 4-year multi-site preclinical drug screening consortium designed to accelerate identification of candidate drug therapies and speed their progress to the clinic.

Neurofibromatosis Therapeutic Consortium (NFTC)
Launched in 2013, this collaboration with the NF Therapeutics Acceleration Program at Johns Hopkins is a three-year program that continues preclinical testing utilizing established animal models from the NFPC.

Patient Registry
CTF launched the NF Patient Registry in 2012. It currently has 4,354 participants. The Registry’s intended primary outcome is “to determine the natural history of NF1, NF2 and schwannomatosis.” It also serves as a referral source for clinical trials.

Synodos for NF2
Launched in 2013, Synodos for NF2 is a CTF-funded consortium of scientists from a variety of institutions who have agreed to share data in real time and work together to find treatments for NF2.

Synodos for NF1
Announced in 2014 and beginning in 2015, Synodos for NF1 is a CTF-funded consortium of cross-disciplinary scientists from a variety of institutions who have agreed to share data in real time and work together to find treatments for NF1.

Patient Support
The Foundation publishes educational brochures for patients, their caregivers and other interested parties on a variety of subjects. These brochures are available in both English and Spanish. Participation in the NF registry offers additional support to patients and their families. In addition to providing up-to-date information about applicable clinical trials, the registry allows patients and their families the opportunity to receive information targeted to their specific NF-related symptoms. In addition to these efforts, The Foundation also sponsors an annual summer camp for youth living with NF.

NF Forum
In response to continued layperson interest in the proceedings of the NF Conference, CTF initiated the annual NF Forum. The Forum is attended by those affected by NF, their families and both scientists and advocates in the NF field. It is held contingent to the NF conference on a biannual basis.

Advocacy
CTF is involved in advocacy on the national level. The Foundation is considered instrumental in the initial and ongoing funding of the Congressionally-Directed Medical Research Program Neurofibromatosis Research Program (CDMRP-NRP). CTF organizes volunteers to petition their representatives in congress and the senate online, by letter and in person, to urge continued and increased funding through the Congressionally-Directed Medical Research Program Neurofibromatosis Research Program and the National Institutes of Health.

Fundraising Programs
CTF has a number of fundraising programs designed to raise money and awareness, as well as to provide a sense of community for those who live with NF. These programs include Racing4Reasearch, NF Endurance, NF Walk and Cupid’s Undie Run.