Dear Friends of NF Tennessee,

We hope you are having a great Summer. Fall 2018 – Spring 2019 has been an exciting time for the local NF community and for NF Tennessee, and it’s about time for an update. Events of special interest to the NF community i...

Hello Friends of NF Tennessee and welcome to our first blog! Here at NF Tennessee we hope the newsletter and website become a familiar source for information about news and events happening locally in regard to neurofibromatosis.

The last nine months...

The annual CTF NF Conference and Forum took place in Austin, Texas June 18-21, 2016. Over 250 researchers including many from England, Europe, and around the world attended. Dr. David Viskochil, one of the researchers who helped identify the NF1 gene...

Dr. Jennifer Brault recently joined the Vanderbilt Children’s Hospital and Vanderbilt’s Neurofibromatosis Clinic. She is originally from northern Ohio and decided in elementary school that she wanted to be a pediatrician. As her education and trainin...

Pennie Brooks is a local NF advocate, activist, and organizer. She is a nurse who lives in Nashville and has a daughter with NF1.

Q: What roles do you play in the NF community?

A: I am a member of the Volunteer Leadership Council for the Children’s Tum...

In any small community and even in some big ones, it is easy for patients with NF to feel that nobody in the community knows much about NF. However, it is helpful to realize that NF is a worldwide concern, and there is a worldwide NF community. A goo...

The following clinical trials and other NF-related trials can be found at ClinicalTrials.gov by searching “neurofibromatosis”. While some of the information is very technical, the basic information on the purpose of the trial is usually straightforwa...

There are two major registries that are actively collecting information on NF patients: the CTF Patient Registry and the Washington University in St. Louis Patient Registry Initiative. 

-Children’s Tumor Foundation (CTF) Patient Registry:

www.ctf.org/u...

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Dear Friends of NF Tennessee,

We hope you are having a great Summer. Fall 2018 – Spring 2019 has been an exciting time for the local NF community and f...

Blog Post #2

August 25, 2019

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August 25, 2019

July 1, 2018