Mission: The children's tumor foundation is dedicated to ending neurofibromatosis (nf). Our mission is to: a) fund research b) increase public awareness c) support patients and families d) encourage establishment of nf clinics.
Programs: Research - the children's tumor foundation supports nf research through a range of funding mechanisms. Our investments in research are three-fold: 1) to attract talented investigators to nf research; 2) to support innovative research; and 3) to foster collaborative efforts to find treatments and cures for neurofibromatosis. The foundation has been at the forefront of key advances in nf research including funding the laboratories that discovered the nf1 and nf2 genes, supporting groundbreaking clinical trials, and establishing the first nationwide nf clinic network and nf patient registry. The foundation sponsors an annual scientific conference which brings researchers together to discuss the latest scientific developments related to nf. Additionally, our programs are designed to integrate with and support larger federally funded projects through the congressionally directed medical research program (cdmrp) and nih.
public education and patient support - the children's tumor foundation engages in public education through its website, quarterly newsletters, media coverage, and its national programs. Through our nf endurance, nf walk, and racing 4 research, the foundation highlights nf heroes and their triumphant spirits. The foundation also sponsors benefit dinners and regional and local events to promote awareness. The children's tumor foundation is dedicated to supporting patients with nf as well as their family members. Through the nf clinic network and the annual nf forum, the foundation brings researchers, providers, and families together to discuss developments in treatments. The foundation also sponsors the annual nf camp which brings nf teens together for one week to enjoy the support and fellowship of their peers. Regional symposia are also held throughout the year.
My son has NF and recently had brain surgery to remove an NF tumor. Children's Tumor foundation has been amazing through his 10 year journey with NF. Through the local NF chapter we have found friends that go through what we have gone through and we attended many of the events they sponsor. Their marketing is first class and their staff so nice and quickly answers any questions I have asked. Perhaps most importantly though, is the funding they provide for research. A large percentage of the funds they raise go to research and very little to administrative costs. This is so important to me because someday the research that CTF has funded will help save my son's life.
When our family first learned that our daughter (who was 4 months old at the time) had NF, we were overwhelmed. The internet had precious little accurate information about NF that was not sensationalized and we were emotionally drained after seeing what might possibly be her bleak future. However, we thankfully soon found that the best source of accurate and update information, and hope, was the Children's Tumor Foundation. From that day almost 10 years ago, we have found that this organization is not only aware of the most cutting edge research and scientific advances in the field, but are funding much of it through their various programs.