January - 2017

Children's Tumor Foundation NF Conference and Forum 2016 Recap

Jan 28, 2017

Children's Tumor Foundation NF Conference and Forum 2016 Recap

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, received the Freidrich von Recklinghausen Award. Dr. Viskochil, who is a researcher and clinician at the University of Utah, is an active member of the CTF national organization and is also active in the CTF NF Camp for teens an

Q & A: Healthcare Perspective with Dr. Jennifer Brault

Jan 28, 2017

Q & A: Healthcare Perspective with Dr. Jennifer Brault

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 training progressed, she specialized in pediatric neurology with a special interest in neuro-genetics. She attended Hillsdale College in Michigan as an undergraduate, before receiving a Master’s Degree in Chemistry from the University of

Q & A: Family Perspective with Pennie Brooks

Jan 27, 2017

Q & A: Family Perspective with Pennie Brooks

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 Tumor Foundation. We are dedicated volunteers who work all year and are passionate about Ending NF. Council members are the public ambassadors for patient education and community outreach within the Foundation. We are often the fir

NF Worldwide

Jan 27, 2017

NF Worldwide

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 good place to see that is on the NF-Network website (www.neurofibromatosis-network.org/en/) which provides a list of NF organizations around the world. As another indication of the international efforts on behalf of NF patients, the

Ongoing Clinical Trials for NF-Related Issues

Jan 27, 2017

Ongoing Clinical Trials for NF-Related Issues

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 straightforward. There is detailed information on who is eligible and at what locations the trial is open. -Phase II Trial of the MEK1/2 Inhibitor Selumetinib (AZD6244 Hydrogen Sulfate) in Adults With Neurofibromatosis Type 1 (NF1) and Inopera

NF Registries

Jan 27, 2017

NF Registries

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/understanding-nf/nf-registry CTF sponsors a Registry for patients with NF1, NF2 and Schwannomatosis that now includes over 7,000 patients. This registry collects information on symptoms and problems of individual patients. When co

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