Children's Tumor Foundation

Rating: 5 stars   1 review

Issues: Health, Cancer

Location: 95 Pine St 16th Fl New York NY 10005 USA

Mission: The mission of the Children''s Tumor Foundation is to: Fund and encourage research and the development of treatments and cures for neurofibromatosis types 1 and 2, schwannomatosis and related disorders (hereafter collectively referred to as "NF); Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information; Assist in the development of clinical centers, best practices and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals; and, Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population''s understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources.
Programs: The Children's Tumor Foundation provides research grants for NF research. To date Foundation-sponsored research has identified the NF1 and NF2 genes, facilitated development of a direct gene test, and explored the link between NF and learning disabilities. The Foundation sponsors a summer camp for children and teenagers affected by NF. The Foundation provides extensive educational information to the public and medical professionals worldwide. It maintains the www.ctf.org web site, bulletin boards and chat rooms, offers a toll-free information line, and educational materials on a variety of NF-related subjects.

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Community Reviews

Rating: 5 stars  

5 people found this review helpful

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.

I've personally experienced the results of this organization in...

Through the Children's Tumor Foundation's NF Clinic Network, we have been able to access excellent clinical care for our daughter and are confident that the doctors and specialists are practicing the most up to date medical techniques and strategies.

What I've enjoyed the most about my experience with this nonprofit is...

They are thankfully moving research closer to a cure by bringing the brightest minds in the scientific field together regularly through the annual NF Conference.

The kinds of staff and volunteers that I met were...

All excellent. A small staff that does the work of a very large organization.

If this organization had 10 million bucks, it could...

Fund all of the excellent research and science in the NF field (which benefits cancer research, heart disease, learning disabilities, and genetics) and increase public awareness of Neurofibromatosis (NF) in the general public.

When was your last experience with this nonprofit?

2010-8-01

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