May is
NF Awareness
Month!

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

Children’s Tumor Foundation Announces Today is World NF Awareness Day For 2 Million People Around the Globe

May 17, 2018, Posted in Awareness, Community, Latest News, Press Release

On May 17, hundreds of landmarks around the world will “Shine a Light on NF” to raise awareness for genetic disorder that causes tumors and has no cure at this time

NEW YORK – May 17, 2018 – The Children’s Tumor Foundation is pleased to announce that in recognition of NF Awareness Month architectural icons across the globe will show their support in the fight against neurofibromatosis (NF) by lighting up in blue and green, the official colors of the NF cause.

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A Conversation with Ken Rudd, Member of the Children’s Tumor Foundation Board of Directors

May 14, 2018, Posted in Awareness, NF Hero, NF1

The Children’s Tumor Foundation launched in 1978 as the National Neurofibromatosis Foundation (NNFF), established by NF patient Lynne Courtemanche, RN, her doctor Allan E. Rubenstein, MD, and attorney Joel S. Hirschtritt, Esq. A young child at the time, Ken Rudd’s mom, Joan Engel, was President of the Foundation from 1981 through 1984. Ken is now a member of CTF’s Board of Directors. 

As we celebrate 40 years of driving research, expanding knowledge, and advancing care for the NF community, we asked Ken to reflect on the early days of the Foundation, how the community has grown, and the progress made in NF research for treatments and a cure.

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Stories of NF: Rachel S.

May 7, 2018, Posted in NF Hero, NF2

I was 16 when I began to have hearing issues. After getting my hearing tested, the results revealed profound hearing loss in my right ear. The hearing test lead to an MRI and then to my diagnosis of NF2.

For me, the physical pain that comes with NF pales in comparison to the mental weight the disease carries.

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NF News Winter 2018 is now online

May 4, 2018, Posted in Awareness, Community, Latest News, Newsletter

The new issue of NF News, the official newsletter of the Children's Tumor Foundation, is now available! In this issue you will find: 

- 40 Years of Fighting NF
- Orphan Drug Status from FDA
- Synodos for NF2 Research Update
- NF Awareness Month
- Donor Impact: The Harrison Family
- And so much more!

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