40 years
of fighting

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



Mar 23, 2018, Posted in Advocacy

On Friday, March 23, President Donald Trump signed into law a $1.3 trillion omnibus spending bill to fund the government through September 30, 2018.  After over a year of continued advocacy by the Children’s Tumor Foundation, the agreement provides $15 million in funding for the Congressionally Directed Medical Research Program – Neurofibromatosis Research Program (CDMRP-NFRP).  This funding continues Congress’ long-standing support of medical research at the Department of Defense, complementary to the Children’s Tumor Foundation’s role as a leader in NF research and advocacy.  

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Stories of NF: Alex S.

Mar 21, 2018, Posted in NF Hero, NF1

Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.

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Understanding the IEP/504: An Interview with School Psychologist Jim Hubbard

Mar 13, 2018, Posted in Awareness, Community, NF1

The following interview was conducted on November 13, 2017 with Jim Hubbard, a school psychologist and counselor, by Kate Kelts, RN, BSN, patient support coordinator for the Children’s Tumor Foundation. Jim has 33 years of experience as a school psychologist working with children and families, as well as living with NF1 himself. This resource is meant to serve as a resource for parents beginning the process of advocating for their child’s education.

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State Representative Robert Cole Sprague Presents First Signed Law Declaring May as NF Awareness Month in the State of Ohio

Mar 12, 2018, Posted in Awareness, Latest News, Press Release

Whereas dozens of states approve proclamations each year, Governor John Kasich signed first law in the country recognizing awareness of genetic disorder

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