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Standing Strong for
NF Research –
How You Can Help 

Call to action from CTF’s CEO

Learn More

You Are the Key:
Unlock Your Awareness Month Toolkit

May is action month for NF, and this
toolkit is your key to making things happen.

Take Action

It’s a GO!
FDA Approves Drug 

It's the second-ever FDA-approved treatment for NF1
and the first-ever for adults!

Learn More

Take Action for NF:
Walk, Run, or Choose Your Own Challenge

Register Today! Every step supports research
and hope for those living with NF.

Shine a Light WalkNF Endurance

Standing Strong for NF Research – How You Can Help

Call to action from CTF’s CEO

Learn More

You Are the Key:
Unlock Your Awareness Month Toolkit

May is action month for NF, and this
toolkit is your key to making things happen.

Take Action

It’s a GO!
FDA Approves Drug 

It's the second-ever FDA-approved treatment for NF
and the first-ever for adults!

Learn More

Take Action for NF:
Walk, Run, or Choose Your Own Challenge

Register Today! Every step supports research
and hope for those living with NF.

Shine a Light WalkNF Endurance
A woman stands behind a boy, both wearing white t-shirts and smiling at the camera against a dark, neutral background.

NF affects 1 in every 2,000 births

What is NF? NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2, or NF2. NF affects 4 million people worldwide. Anyone can be born with NF, and it impacts everyone differently.

Finding Hope Together

Meet a courageous mom whose journey with her daughter’s NF diagnosis began with uncertainty—but led to hope through the Children’s Tumor Foundation (CTF). Kimberly Snipes shares how CTF became a lifeline, offering answers, support, and a community that understands. Watch her story, and discover how CTF can be a source of strength and guidance for you, too.

A woman with curly blond hair sits in an armchair by large windows, with a framed photo and chess piece on a side table next to her.Play Video
Share Your Story: Tell Us About Your NF Journey

Learn More about

NF1

Neurofibromatosis type 1

Learn More about

NF2-SWN

NF2-related schwannomatosis

Learn More about

SWN

Schwannomatosis

Helpful Links

Find a Doctor

Search our database for an NF specialist near you

Learn More

Find an Event

Signup or donate to a CTF fundraising event

Learn More
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CTF Grant Giving

View upcoming RFAs and search CTF-funded projects

Learn More
View Our Resources

What are you looking for?

Search our website for news and information about NF. 

Latest News

View All News
Cover of the 2024 Impact Report by Children's Tumor Foundation, featuring a blue molecular structure with the text "Accelerating Discovery, Transforming Lives.
Awareness

Children’s Tumor Foundation 2024 Impact Report

The Children’s Tumor Foundation (CTF) has released its latest impact report, detailing significant progress in…
A person with short hair, glasses, and a black jacket smiles against a dark background.
Featured

CTF CEO Annette Bakker Moderates Panel at World Orphan Drug Congress 2025

Children’s Tumor Foundation CEO Annette Bakker to speak on unleashing the life-changing potential of shelved…
A group of laboratory glassware, including beakers and flasks, is arranged on a reflective surface with a blue light in the background.
CTF in the News

How a Once-Abandoned Drug Found New Life – and Changed the Future for NF Patients

The drug mirdametinib was once shelved by Pfizer. Today, it’s Gomekli - an FDA-approved treatment…
A person with long wavy hair, wearing a black and white checkered blazer and a white shirt, against a gray background.
Awards & Grants

Young Investigator: Q&A with Sarah Morrow about NF1 and MPNST

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
The United States Capitol building with its large dome and columns is shown from the front. An American flag waves on top, under a clear blue sky.
Advocacy

Children’s Tumor Foundation Chair Pens Message Urging Restoration of NF Research Funding

In an op-ed published in RealClearHealth, Gabriel Groisman, Chair of the Children's Tumor Foundation, calls…
The United States Capitol dome with an American flag waving in front, set against a partly cloudy sky.
Advocacy

Standing Strong for NF Research and How You Can Help

March 26, 2025 Update:  Dear Friends, I’m reaching out about the federal NF research funding…
Child cheering beside text: "IT'S A GO! FDA approves drug for children and adults with NF1." Website: ctf.org.
NF1

IT’S A GO! NF’s NEXT BIG WIN!

Today, we make history... again! The FDA has officially approved Gomekli (mirdametinib) - the second-ever…
Cover of the 2024 Impact Report by Children's Tumor Foundation, featuring a blue molecular structure with the text "Accelerating Discovery, Transforming Lives.
Awareness

Children’s Tumor Foundation 2024 Impact Report

The Children’s Tumor Foundation (CTF) has released its latest impact report, detailing significant progress in…
A person with short hair, glasses, and a black jacket smiles against a dark background.
Featured

CTF CEO Annette Bakker Moderates Panel at World Orphan Drug Congress 2025

Children’s Tumor Foundation CEO Annette Bakker to speak on unleashing the life-changing potential of shelved…
A group of laboratory glassware, including beakers and flasks, is arranged on a reflective surface with a blue light in the background.
CTF in the News

How a Once-Abandoned Drug Found New Life – and Changed the Future for NF Patients

The drug mirdametinib was once shelved by Pfizer. Today, it’s Gomekli - an FDA-approved treatment…
A group of 12 people stands in a row inside a building with glass walls. Some are wearing casual attire, and all are smiling.
Featured

CTF-Hosted Lab Tour: Cincinnati Children’s Hospital

The Children’s Tumor Foundation was proud to host a group of patients and families affected…
A person with long wavy hair, wearing a black and white checkered blazer and a white shirt, against a gray background.
Awards & Grants

Young Investigator: Q&A with Sarah Morrow about NF1 and MPNST

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
The United States Capitol building with its large dome and columns is shown from the front. An American flag waves on top, under a clear blue sky.
Advocacy

Children’s Tumor Foundation Chair Pens Message Urging Restoration of NF Research Funding

In an op-ed published in RealClearHealth, Gabriel Groisman, Chair of the Children's Tumor Foundation, calls…
The United States Capitol dome with an American flag waving in front, set against a partly cloudy sky.
Advocacy

Standing Strong for NF Research and How You Can Help

March 26, 2025 Update:  Dear Friends, I’m reaching out about the federal NF research funding…
A paper airplane flies away from an envelope icon with charts, trailing a dotted line.

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