China's 'tumour man' undergoes more surgery to remove huge growths from his face - this time weighing 1.5kg
Huang Chuncai, 37, from Hunan province, suffers from an extreme case of neurofibromatosis. The condition has caused large tumours on his face that have completely distorted his features. (Source: the Mail online | Health)
Source: the Mail online | Health - December 27, 2013 Category: Consumer Health News Source Type: news

Initial consensus recommendations for studies of neurofibromatosis
As potentially effective new treatments for neurofibromatosis (NF) are developed, standardized research approaches - including outcome measures specific to NF- are needed. The first report from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration has been published as a supplement to Neurology®, the Official Journal of the American Academy of Neurology (AAN). The journal is published by Lippincott Williams & Wilkins, a part of Wolters Kluwer Health. (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - December 11, 2013 Category: Consumer Health News Tags: Neurology / Neuroscience Source Type: news

REiNS collaboration seeks common outcome measures for neurofibromatosis clinical trials
(Wolters Kluwer Health) As potentially effective new treatments for neurofibromatosis (NF) are developed, standardized research approaches -- including outcome measures specific to NF -- are needed. The first report from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration has been published as a supplement to Neurology®, the Official Journal of the American Academy of Neurology. The journal is published by Lippincott Williams & Wilkins, a part of Wolters Kluwer Health. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - December 9, 2013 Category: Global & Universal Source Type: news

Desperately lonely Indian man with huge facial tumour undergoes surgery - and now hopes he'll find true love
Lalit Ram lived as a virtual recluse in his remote Indian village due to the condition neurofibromatosis which caused a large sagging tumour on his face. (Source: the Mail online | Health)
Source: the Mail online | Health - November 15, 2013 Category: Consumer Health News Source Type: news

Potential new drug identified for inherited cancer
Scientists from the Florida campus of The Scripps Research Institute (TSRI) have identified a new drug candidate for an inherited form of cancer with no known cure. The new study showed the drug candidate - known as FRAX97 - slowed the proliferation and progression of tumor cells in animal models of Neurofibromatosis type 2. This inherited type of cancer, caused by mutations in the anti-tumor gene NF2, leads to tumors of the auditory nerve that connects the inner ear to the brain... (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - October 6, 2013 Category: Consumer Health News Tags: Cancer / Oncology Source Type: news

Can the Diagnosis of NF1 Be Excluded Clinically?Can the Diagnosis of NF1 Be Excluded Clinically?
Due to atypical presentations of NF1, molecular confirmation of neurofibromatosis may be needed for diagnosis. Journal of Medical Genetics (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - October 3, 2013 Category: Consumer Health News Tags: Business of Medicine Journal Article Source Type: news

What Neoplasms are Patients with Neurofibromatosis At Risk For?
Discussion Neurofibromatosis Type 1 (NF1) is one of many neurocutaneous diseases with a probable underestimated incidence of 1:3000. Also called phacomatoses, a review can be found at: What is the Epidemiology and Genetics of the Major Phacomatoses? The key elements of NF1 are: Neurofibromatosis Type 1 Epidemiology: 1:2500-3000 – most common phacomatosis Genetics: autosomal dominant with variable penetrance, associated with chromosome 17 Neurological: various central nervous system tumors especially neurofibromas (often benign but may act malignant because of location or size, tumors may also degenerate into a ma...
Source: PediatricEducation.org - September 23, 2013 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

What Neoplasms are Patients with Neurofibromatosis At Risk For?
Discussion Neurofibromatosis Type 1 (NF1) is one of many neurocutaneous diseases with a probable underestimated incidence of 1:3000. Also called phacomatoses, a review can be found at: What is the Epidemiology and Genetics of the Major Phacomatoses? The key elements of NF1 are: Neurofibromatosis Type 1 Epidemiology: 1:2500-3000 – most common phacomatosis Genetics: autosomal dominant with variable penetrance, associated with chromosome 17 Neurological: various central nervous system tumors especially neurofibromas (often benign but may act malignant because of location or size, tumors may also degenerate into a ma...
Source: PediatricEducation.org - September 23, 2013 Category: Pediatrics Authors: Donna M. D'Alessandro, M.D. Tags: Uncategorized Source Type: news

Study suggests antioxidant treatment may help NF1-linked behavioral issues
New research in mouse models suggests that treatment with antioxidants may help reduce behavioral issues linked to the genetic nervous system disorder Neurofibromatosis 1 (NF1) and an associated condition called Costello syndrome. Scientists from Cincinnati Children's Hospital Medical Center report their findings Sept. 12 in Cell Reports. The authors show that defects in the NF1/Ras molecular pathway, which cause the disorders, trigger production of harmful oxidative nitric oxide molecules in the oligodendrocyte glial brain cells of mice... (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - September 16, 2013 Category: Consumer Health News Tags: Neurology / Neuroscience Source Type: news

The protein Merlin "arranges" other protein interactions to control growth and prevent cancer
Johns Hopkins researchers have figured out the specific job of a protein long implicated in tumors of the nervous system. Reporting on a new study described in the Sept. 12 issue of the journal Cell, they detail what they call the "matchmaking" activities of a fruit fly protein called Merlin, whose human counterpart, NF2, is a tumor suppressor protein known to cause neurofibromatosis type II when mutated... (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - September 15, 2013 Category: Consumer Health News Tags: Cancer / Oncology Source Type: news

Study suggests antioxidant treatment may help NF1-linked behavioral issues
(Cincinnati Children's Hospital Medical Center) New research in mouse models suggests that treatment with antioxidants may help reduce behavioral issues linked to the genetic nervous system disorder Neurofibromatosis 1 (NF1) and an associated condition called Costello syndrome. Scientists report their findings Sept. 12 in Cell Reports. The authors show that defects in the NF1/Ras molecular pathway, which cause the disorders, trigger production of harmful oxidative nitric oxide molecules in the oligodendrocyte glial brain cells of mice. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - September 12, 2013 Category: Global & Universal Source Type: news

'Merlin' is a matchmaker, not a magician
(Johns Hopkins Medicine) Johns Hopkins researchers have figured out the specific job of a protein long implicated in tumors of the nervous system. Reporting on a new study described in the Sept. 12 issue of the journal Cell, they detail what they call the "matchmaking" activities of a fruit fly protein called Merlin, whose human counterpart, NF2, is a tumor suppressor protein known to cause neurofibromatosis type II when mutated. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - September 11, 2013 Category: Global & Universal Source Type: news

Widemann honored by Children’s Tumor Foundation
Brigitte Widemann, M.D., is flanked by Annette Bakker, chief scientific officer of the Children’s Tumor Foundation, and Kevin Shannon, M.D., from the University of California, San Francisco, after receiving the von Recklinghausen Award at the June 2013 CTF Neurofibromatosis Conference in Monterey, Calif. Neurofibromatosis type 1, or NF1, is a genetic disorder that usually manifests itself during childhood with a variety of skin conditions and the development of tumors of the peripheral and central nervous system. Although it is not generally considered a fatal condition, people with NF1 can develop tumors called plexifor...
Source: NCI Benchmarks - June 25, 2013 Category: Cancer & Oncology Authors: Richard Folkers Tags: cancer Childhood cancer award Neurofibromatosis tumor Source Type: news

Disturbed Sleep Common in Nerve Disorder (CME/CE)
BALTIMORE (MedPage Today) -- Children diagnosed with neurofibromatosis were more likely than controls to have more disturbed sleep, researchers reported here. (Source: MedPage Today Psychiatry)
Source: MedPage Today Psychiatry - June 5, 2013 Category: Psychiatry Source Type: news

Running in your undies for a cause
The Cupid's Undie Run has raised over $1.3 million for neurofibromatosis research. Who would have thought that running around in your underwear could do such good? (Source: CNN.com - Health)
Source: CNN.com - Health - February 25, 2013 Category: Consumer Health News Source Type: news