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.
Review from Guidestar