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Our vision is to end NF

The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.


Research for a cure

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.

Get to know our NF Heroes

Latest News


NF1 Clinical Trial of Selumetinib “Most Exciting” Says National Cancer Institute Director

Aug 16, 2018, Posted in Latest News, NF1, Science

Speaking before the House Energy and Commerce Committee of the U.S. House of Representatives on the implementation of the 21st Century Cures Act, Norman (Ned) Sharpless, M.D., Director of the National Cancer Institute (NCI) was asked by Missouri Congressman Billy Long, “Can you tell us about the most exciting thing that is being supported in the Cancer Moonshot?”

Sharpless focused his answer on the NCI’s Rare Tumor Initiative and the clinical trial presented in June at the ASCO Conference by Andrea Gross, MD of the NCI about the selumetinib (MEK inhibitor) clinical trial treating inoperable NF1 plexiform neurofibromas.

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Children’s Tumor Foundation Funded Research Demonstrates Important Genotype-Phenotype for a Three Base Pair Deletion in NF1

Sep 18, 2018

International collaborative research led by Ludwine Messiaen, PhD, shows that while a three-base pair, in-frame deletion called p.Met992del in the NF1 gene has a mild phenotype for people with the genetic disorder neurofibromatosis type 1, or NF1, the mutation does cause complications. CTF has invested in Dr. Messiaen’s promising work by providing the Isaac and Sadie Fuchs Genotype-Phenotype Grant.

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Do you have a question about NF? Ask Kate!

Sep 18, 2018, Posted in Community, Video

Ask Kate! is a new weekly YouTube series to answer your questions about neurofibromatosis! Kate Kelts, RN, BSN is the Patient Support Coordinator for the Children's Tumor Foundation, and each week she will answer questions submitted directly by viewers. If you have a question you'd like to see Kate answer, you can include it in the YouTube comments of the latest video, or email Kate at

Click here to subscribe and click the bell to receive alerts when new videos are posted. Click "Read More" to view the first two videos in this exciting new YouTube series!

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Ruby Anniversary Gala to Celebrate 40 Years of the Children’s Tumor Foundation

Sep 18, 2018, Posted in Galas, NF2

Honorees include philanthropist Carol Harrison Kalagher, NIH Director Francis S. Collins, and NF Ambassador McKinnon Galloway. Festivities to take place at the renowned American Museum of Natural History in NYC on October 22.

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