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Our Mission & Vision

Mission: Drive research, expand knowledge,
and advance care for the NF community.

Vision: End NF.

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We are dedicated
to medical progress.

At the Children’s Tumor Foundation, we’re working to better the lives of more than 4 million people who live with some type of neurofibromatosis or schwannomatosis. We envision a day when patients can live their lives free of the pain and difficulties that come with nerve tumors, and our innovative team-based approach to drug development is making that vision a reality.

We’re here for everyone

NF patients are told to “watch and wait” to see if their tumors will grow, and determine later if they will impact their lives with devastating conditions such as cancer. We don’t think that’s fair, and we don’t think that’s necessary. By bringing together the brightest minds in research and industry, we can change “watch and wait” to “here’s what you can do.


Learn more about neurofibromatosis type 1, or NF1, which affects 1 in every 2,500 births.


Learn more about schwannomatosis, or SWN, which affects 1 in every 20,000 births (1 in every 70,000 excluding NF2-SWN)


Learn more about NF2-related schwannomatosis, or NF2-SWN, which was formerly called neurofibromatosis type 2. NF2-SWN affects 1 in every 25,000 births.

How We Do it

CTF’s Strategic Plan has Four Innovation Pillars

Develop More Drugs

Expand the research field, develop panels of drug selection tools, double the number of R&D grants, and launch revolutionary projects.

Accelerate Treatments

Expedite the discovery of life-changing therapies with an innovative preclinical hub-and-spoke model, the ultimate all-in-one solution for pharma and biotech pioneers.

Strengthen Clinical Trials

Accelerate the development and approval of drugs being evaluated in clinical trial consortia and/or platform trials.

Empower Stakeholders

Enhance the understanding of NF and the NF Registry, increase patient participation, and train ambassadors. Expand the NF Clinic Network and the number of physicians and specialists who treat NF, including adult care.

Ending NF through research


Founded in 1978, CTF celebrates 45 years of funding research, investing nearly $200 million to advance the understanding of NF in the search for treatments and a cure.


CTF is the world’s leading nonprofit dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide who live with NF


Our innovation pillars are to develop more drugs, accelerator treatments, strengthen clinical trials, and empower all stakeholders.

Expanding Knowledge

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Help us make sure the world knows about NF and sees the people who live with it.

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CTF hosts webinars, clinic events near you, an annual NF Summit for patients, and the NF Conference for professionals.

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Search our Resource Library to learn more about NF and the aspects that are most important to you.

Advancing Treatment and Inspiring Hope

The Children’s Tumor Foundation is passionate about working with you, our dedicated donors and friends, to Make NF Visible. We want to make sure the world sees NF and sees each person living with it.  Please watch this video to hear the passionate voices of Christine, Joel, Salina, and Tyler – four incredible people who are making NF visible.

Our Growing and Global Reach

At the Children’s Tumor Foundation, we’re dedicated to bettering the lives of millions of people living with NF: all forms of neurofibromatosis and schwannomatosis. We want to end NF as fast as we can by connecting the unconnected, leading the way with a strategy that applies innovative and inventive approaches to scientific advancement and improved patient care. Read about the important things that happened in NF research in 2023 below.

NF2-INTUITT clinical trial expands with a second drug, neratinib, following the progress of its first drug, brigatinib.

CTF funds major MPNST study on innovative biomarker blood test for earlier diagnosis of cancer predisposition in NF1 patients.

NF1 and NF2 gene therapy / editing projects advance quickly to non-human primates.

Nutraceutical clinical study on curcumin and high phenolic extra virgin olive oil focuses on a combo of nutritional supplements for cutaneous and plexiform neurofibromas.

Partnership with FUSF explores non-invasive ultrasound treatments for NF2 patients to reduce the need for surgery, chemo, or radiation.

NF2 and schwannomatosis diagnostic criteria updated, with all NF manifestations now up-to-date for more accurate diagnosis and improved care for patients.

CTF sponsors two adult care clinics in Los Angeles, CA, and Little Rock, AR, to improve adult access to knowledgeable medical expertise.

CTF Europe launches INFER: Masterclasses in NF and mentoring programs for all medical professionals by the world’s leading NF experts.

he NF Registry grows and diversifies through availability in 5 languages: English, Spanish, French, Italian, and Portuguese.

Inaugural NF Summit is held as the largest ever educational gathering for all patients, caregivers, volunteers, and advocates in the NF community.

Make NF Visible Gallery

Get Involved

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Join a fundraiser or start one near you

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Learn how you can be involved in NF research

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Make a Donation

Your gift will make a difference

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Raise Awareness

Help us spread the word about NF