New research offers hope to neuro-tumor patients
(University of Plymouth) New research published today, July 10, 2017, online in the journal Oncogene could offer hope to the thousands of, mainly young, people affected by the hereditary condition Neurofibromatosis 2 (NF2). In addition to NF2 disease there could be potential benefit for other cancers with the same mutations. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - July 9, 2017 Category: International Medicine & Public Health Source Type: news

Neurofibromatosis type 1 sufferer has hundreds of tumours
Every day Noreen Steenson from Belfast, Northern Ireland, wakes up to a new lump, caused by rare and incurable neurofibromatosis (NF) type 1. She has been left housebound. (Source: the Mail online | Health)
Source: the Mail online | Health - June 21, 2017 Category: Consumer Health News Source Type: news

4 questions parents have about moyamoya disease
Last month, families from across the country gathered at Boston Children’s Hospital to celebrate World Moyamoya Day. The expert speakers at the Moyamoya Family Day Symposium shared the latest information about this rare but very serious condition with parents and patients alike. Moyamoya disease occurs when the walls of the internal carotid arteries — the vessels that supply blood to important areas of the brain — become thickened and narrowed. As a result, blood flow to the brain slows, making blood clots more likely. Kids with moyamoya disease are at significantly higher risk of having a stroke, as well as other co...
Source: Thrive, Children's Hospital Boston - June 13, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Ask the Expert Diseases & Conditions Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news

Scripps Florida scientist wins $2 million grant to study childhood disorder
(Scripps Research Institute) Assistant Professor Seth Tomchik of the Florida campus of The Scripps Research Institute (TSRI) has received $2 million in funding from the National Institutes of Health's National Institute of Neurological Disorders and Stroke (NINDS). The new five-year grant funding will support the study of neurofibromatosis type I, an inherited disorder that results from genetic mutations affecting a protein called neurofibromin (Nf1). (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - May 31, 2017 Category: International Medicine & Public Health Source Type: news

Evidence behind reports of new baldness cure is a little thin
Conclusion The current study identified a group of cells in the hair follicles of mice which are important both in forming the hair shaft to allow hair growth, and also in maintaining hair colour. So far this research has been in mice, but the basic biology of cells in mammals is very similar, so it seems likely that the findings would also apply to humans. Researchers are also likely to want to perform tests on human cells in the laboratory to confirm their findings. The findings represent an advance in what is known about how hair grows and maintains its colour. However, this doesn't automatically mean the researchers ar...
Source: NHS News Feed - May 8, 2017 Category: Consumer Health News Tags: Genetics/stem cells Older people Source Type: news

Boy, 8, whose face has been distorted by giant tumours
Amare Stover, from Decatur, Alabama, was born with neurofibromatosis type one - a genetic disorder that causes tumors to develop all over his body. (Source: the Mail online | Health)
Source: the Mail online | Health - May 1, 2017 Category: Consumer Health News Source Type: news

8-Year-Old Writes Letter Requesting A Park Swing For Brother With Disabilities
After visiting a new local park, 8-year-old Naomi Gwynne had an important request for the “park builders.” She wanted them to include a swing for her brother with disabilities and other kids like him. Naomi’s mother, Miriam Gwynne, told The Huffington Post that she recently took Naomi and her twin brother, Isaac, to a new park near their home in Scotland. Naomi and Isaac both have autism. Isaac is nonverbal and has neurofibromatosis type 1 and learning difficulties. He is also vision-impaired. During their visit to the park, Naomi noticed there were no swings designed with kids like her brother in mind, s...
Source: Healthy Living - The Huffington Post - March 22, 2017 Category: Consumer Health News Source Type: news

Norfolk girl bullied for facial tumour finds love
Sophie Walker, from Norfolk, was cruelly dubbed 'tumour girl' after inheriting rare condition neurofibromatosis. But now she's finally getting the last laugh. (Source: the Mail online | Health)
Source: the Mail online | Health - March 22, 2017 Category: Consumer Health News Source Type: news

Fighting for Kennedy: Coping with moyamoya disease
If you happen to be waiting in line at the supermarket with Kennedy Grace Cheshire, you’ll likely leave the store with a whole new group of friends. This outgoing five-year-old can’t resist introducing herself to her fellow shoppers — and then introducing them to each other. “She’s never met a stranger,” says her mother, Amber. Kennedy, who lives in Texas, brought that playful attitude to the East Coast last year when she and her family arrived at Boston Children’s Hospital for evaluation and treatment. At age two, she had been diagnosed with neurofibromatosis 1 (NF1), a genetic condition that causes symptoms...
Source: Thrive, Children's Hospital Boston - March 21, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news

'China's Elephant Man' who has a 33lb tumour on his face
Huang Chuncai, from a rural part of central China, has suffered from neurofibromatosis - the name for a number of conditions that cause swellings or lumps - since he was four years old. (Source: the Mail online | Health)
Source: the Mail online | Health - March 1, 2017 Category: Consumer Health News Source Type: news

Father, 47, who has hundreds of tumours across his body
Believed to be suffering from neurofibromatosis, Shadot Hossain, from Shajadpur, Bangladesh, is in a race against time to secure surgery to remove the tumours - and save his sight. (Source: the Mail online | Health)
Source: the Mail online | Health - February 16, 2017 Category: Consumer Health News Source Type: news

Atrial Septostomy and Targeted Therapy in PH With NF1 Atrial Septostomy and Targeted Therapy in PH With NF1
The combination of atrial septostomy with targeted therapy may be an effective approach in the treatment of neurofibromatosis complicated by pulmonary hypertension.BMC Pulmonary Medicine (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - February 10, 2017 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

Huddersfield father and son both with NF1 discover NHS will only pay for 3-year-old's treatment
Nathan Lewis, 30, and Thiago, from Huddersfield, were both born with neurofibromatosis type 1 - which causes masses. They now both have cancerous tumours as a result of the condition. (Source: the Mail online | Health)
Source: the Mail online | Health - January 12, 2017 Category: Consumer Health News Source Type: news

Kent toddler who suffers from neurofibromatosis receives breakthrough treatment
Skyler McKenzie, of Tonbridge, Kent, suffers from neurofibromatosis, which causes a large number of tumours to appear throughout her body. (Source: the Mail online | Health)
Source: the Mail online | Health - January 8, 2017 Category: Consumer Health News Source Type: news

NIH reports positive results from Phase I trial of selumetinib to treat pediatric neural tumours
The US National Institutes of Health (NIH) has reported positive results from its Phase I clinical trial of selumetinib to treat children with the common genetic disorder neurofibromatosis type 1 (NF1) and plexiform neurofibromas. (Source: Drug Development Technology)
Source: Drug Development Technology - January 3, 2017 Category: Pharmaceuticals Source Type: news