The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.
Since its formation, the Children’s Tumor Foundation has been crucial to the development of solid scientific data about the genetic disorder neurofibromatosis (NF). Thanks to the generosity of our donors and supporters, we are breaking through barriers and forging the pathway that will lead to a cure.
“We first learned of Trinity's diagnosis when she was 4 years old. We thought there was just no way that she could have THAT many birth marks and she was constantly falling, she was always one big bruise. We took her to her pediatrician and lifted up her shirt and come to find out she already had over 50 cafe au lait spots. We had no idea what on earth it was, nevertheless how to pronounce neurofibromatosis."
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By Angela Velasquez
I have an atypical face; my face is not symmetrical. When I am out in public, strangers tend to look at me with a puzzled gaze. They stare because I have a facial disfigurement due to neurofibromatosis. My right eye, which is a prosthetic, protrudes out and overall the right side of my face is slightly lower than that of my left. So, yes, my face is atypical which causes for a lot of wondering eyes.
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“I was diagnosed when I was about 18 months old. A nurse recognized the cafe au lait spots and recommended my parents bring me to a neurologist. NF has triggered severe chronic migraines for most of my life. I missed many days of school because of the migraines and I feared I wouldn't be able to work due to them. I worked up the courage to try working when I was old enough and found that I was able to do it despite the migraines; in fact, I began having migraines less often after I stopped letting them hold me back."
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Each year, the National Cancer Institute (NCI) prepares a report to communicate to the President and to Congress NCI’s research priorities, progress made to date, scientific areas of opportunity that will advance cancer research and improve patients’ lives, and the funding needed to do so. This year, the FY2019 report included stories to highlight how investments in cancer research help people living longer and healthier lives. One of these stories is a profile of NF Hero Philip Moss.
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