Changes to a gene called LZTR1 predispose people to develop a rare disorder where multiple tumors called schwannomas form near nerve pathways, according to a study published today in the journal Nature Genetics and led by researchers from the University of Alabama at Birmingham.
Posted:Sat, 28 Dec 2013 11:30:00 EST
On December 19, Senators Franken (D-MN) and Mark Kirk (R-IL) introduced the Cancer Treatment Parity Act (S. 1879) in the U.S. Senate. The bills would require any health plan that provides coverage for cancer chemotherapy treatment to provide coverage for orally administered and self-injectable anticancer medications at a cost no less favorable than the cost of IV, port administered, or injected anticancer medications.
Posted:Sat, 28 Dec 2013 10:30:00 EST
Research Highlight: Intramedullary ependymomas are rare and benign tumors in the adult. Little is known about their physiopathology, but the implication of the NF2 gene is suspected because of their presence in a third of patients with type 2 neurofibromatosis (NF2), a disorder caused by mutation of the NF2 gene.
Posted:Sat, 28 Dec 2013 09:30:00 EST
Research Highlight: To determine the rate of growth in vestibular schwannomas and the rate of hearing decline in neurofibromatosis type 2 (NF2) patients not undergoing active treatment.
Posted:Sat, 28 Dec 2013 08:30:00 EST
Research Highlight: To investigate the outcomes from ipsilateral simultaneous or sequential cochlear implantation in patients with neurofibromatosis type 2 (NF2) after vestibular schwannoma removal with cochlear nerve preservation.
Posted:Sat, 28 Dec 2013 07:00:00 EST
New Jersey pharmaceutical companies, healthcare providers and patient advocates are working together – in a newly-formed group called NJ Rare — to solve the vexing challenge of finding treatments for diseases that affect relatively few people and therefore are the focus of less research.
Posted:Sat, 28 Dec 2013 06:30:00 EST
Medical researchers at the University of Alberta have discovered that combination drug therapy didn’t work well in clinical trials for cancer patients because one drug was making the other drug ineffective.
Posted:Mon, 09 Dec 2013 11:30:00 EST
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).
Posted:Mon, 09 Dec 2013 10:30:00 EST
We conducted a single-institution, prospective, 2-stage, open-label phase II study to estimate the response rate to everolimus in neurofibromatosis type 2 (NF2) patients with progressive vestibular schwannoma (VS).
Research Highlight: Current standing and frontiers of gene therapy for meningiomas
Posted:Mon, 09 Dec 2013 09:30:00 EST
The authors performed a literature review on the most relevant genes associated with meningiomas and both current and potential gene therapy strategies to treat these tumors.
Posted:Mon, 09 Dec 2013 08:30:00 EST
Here we report the results of a high-resolution live cell image-based RNA interference screen targeting a collection of 70 human tumor suppressor genes to uncover cancer genes affecting MT dynamic instability.
Posted:Mon, 09 Dec 2013 07:30:00 EST
Although hearing loss and facial weakness have been identified as important functional outcomes for patients with NF2, there is a lack of consensus regarding appropriate endpoints in clinical trials.
Posted:Tue, 03 Dec 2013 11:30:00 EST
A new study suggests that electronic medical records may have another, entirely different use: as a Rosetta Stone for our DNA. Researchers are using them to trace links between genes and disease.
Posted:Sat, 23 Nov 2013 11:30:00 EST
D. Bradley Welling, M.D., Ph.D., F.A.C.S., has been named the next Chief of Otolaryngology for the Massachusetts Eye and Ear /Massachusetts General Hospital departments, Chairman of Otology and Laryngology for Harvard Medical School (HMS), and the Walter Augustus LeCompte Professor of Otology and Laryngology at HMS, following a year-long, nationwide search. Dr. Welling will succeed Joseph B. Nadol, Jr., M.D., who is stepping down as chair and chief to focus more intensely on research. The appointment will become effective in March 2014.
Posted:Sat, 23 Nov 2013 10:30:00 EST
Neuroscientist Ryan Watts, along with Genentech biochemist Mark Dennis, devised a far more subtle solution to get antibodies to cross the BBB—receptor-mediated transcytosis. Their success surprised neuroscientists and caught the attention of the rest of the pharma industry, which has become eager to identify new ways to breach the BBB.
Posted:Sat, 23 Nov 2013 09:30:00 EST
The NF-2 Support Group is open to people in Michigan, Western Ontario, and neighboring areas. Some members have been dealing with the diagnosis for decades, and others have been diagnosed more recently. As I understand it, Michigan appears to have the only (NF-2) support group in the country, that accommodates deaf people.
Posted:Sun, 17 Nov 2013 16:30:00 EST
Pharmaceutical giant Pfizer has been ordered to pay $142 million US in damages for fraudulently marketing gabapentin, an anti-seizure drug marketed under the name Neurontin.
Posted:Fri, 15 Nov 2013 08:30:00 EST
The second annual Help Stop NF2-Smile Project’s silent auction will be Saturday beginning at 6 p.m. at the Creative Arts Guild. The mission is to “help provide well-needed support so that those affected may regain their stolen facial expressions, most especially, their smile,” Coulter has said about his organization.
Posted:Wed, 13 Nov 2013 08:30:00 EST
A breakthrough in genetics – described as “jaw-dropping” by one Nobel scientist – has created intense excitement among DNA experts around the world who believe the discovery will transform their ability to edit the genomes of all living organisms, including humans.
Posted:Wed, 13 Nov 2013 07:30:00 EST
Research Highlight: Here, we analyzed the frequency of both copy number changes involving chromosome 22 and NF2 mutations in 20 sporadic meningiomas using high-density SNP-arrays, interphase-FISH and PCR techniques.
Posted:Wed, 13 Nov 2013 06:30:00 EST
A new Canadian study suggests people taking a commonly used type of high blood pressure medication should not be prescribed a particular type of antibiotic. The study suggests the combination can result in rare but serious kidney injuries.
Posted:Tue, 05 Nov 2013 11:30:00 EST
At NF Midwest’s annual family symposium held on October 12, 2013, Dr. Joseph Kissil from the Scripps Institute in Florida spoke about current research on the identification and development of therapeutic targets in neurofibromatosis type 2. The transcript from the session is now available online.
Posted:Tue, 05 Nov 2013 10:30:00 EST
When, in the late 1980s, the genes for debilitating inherited diseases began to be identified, many believed that cures were within reach, by replacing the faulty genes with working ones. But getting the right gene into the right place without doing more harm than good proved tricky. Now, 23 years after the first gene therapy trial for a rare immune disease called ADA-SCID, researchers finally have some successes to report.
Posted:Tue, 05 Nov 2013 09:30:00 EST
Researchers at Cambridge University’s engineering department are developing a device which could rid hearing aid wearers of annoying background noise. Led by Dr Richard Turner, the research could forever remove sounds such as wind, traffic and talking, which affect people’s aids.
Posted:Tue, 05 Nov 2013 08:30:00 EST
Abstract: We reviewed the published literature to more accurately define the risk of developing secondary neoplasms after stereotactic radiosurgery. 36 cases of SRS-induced neoplasms were identified. More than half of the cases had an initial diagnosis of vestibular schwannoma.
Posted:Thu, 24 Oct 2013 10:30:00 EST
Emma-Rose Gibson can see clearly no more than three centimetres in front of her, but a new device is allowing the nine-year-old Ottawa girl to watch TV.
Posted:Thu, 24 Oct 2013 09:30:00 EST
Relief from dry mouth is now just a spray away. Mission Pharmacal Company today announced the launch of Aquoral®, a safe and effective protective oral spray that moistens and lubricates the mouth for up to four hours.
Posted:Thu, 24 Oct 2013 08:30:00 EST
Research Highlight: The pupose of this study is to assess the long-term outcome and toxicity of fractionated stereotactic radiation therapy (FSRT) and stereotactic radiosurgery (SRS) for 100 vestibular schwannomas treated at a single institution.
Posted:Thu, 24 Oct 2013 07:30:00 EST
Research Highlight: A national consensus protocol was produced in England as a guide for cochlear implantation (CI) and auditory brainstem implantation (ABI) in these patients.
Posted:Thu, 24 Oct 2013 07:00:00 EST
Researchers discovered that cancers wrap themselves in an invisible protective shield. And they learned that they could break into that shield with the right drugs.
Posted:Wed, 16 Oct 2013 10:30:00 EST
Cancer Research UK scientists have found a way of delivering drugs more effectively to treat life-threatening cancers that have spread to the brain, according to research published in the Journal of the National Cancer Institute.
Posted:Wed, 16 Oct 2013 10:00:00 EST
Chemical compounds found in marijuana can help treat multiple sclerosis-like diseases in mice by preventing inflammation in the brain and spinal cord, according to a study reported in the Journal of Neuroimmune Pharmacology.
Posted:Wed, 16 Oct 2013 09:30:00 EST
A father with a rare condition which left him in agonising pain at the slightest touch has kissed his wife for the first time in four years – after having a piece of his skull removed. Mark Steadman, 38, was unable to go outside or wash his face after being diagnosed with trigeminal neuralgia (TN) in 2009.
Posted:Wed, 16 Oct 2013 09:00:00 EST
Two Americans and a German-American won the Nobel Prize in medicine on Monday for discovering how key substances are transported within cells, a process involved in such important activities as brain cell communication and the release of insulin.
Posted:Thu, 03 Oct 2013 09:00:00 EST
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.
Posted:Thu, 03 Oct 2013 08:00:00 EST
Research Highlight: Findings indicated that Amot acts as a Yap cofactor, preventing Yap phosphorylation and augmenting its activity toward a specific set of genes that facilitate tumorigenesis.
Posted:Thu, 03 Oct 2013 07:00:00 EST
Brain surgery is a dicey business. Even the most experienced surgeons can damage healthy tissue while trying to root out tumors deep inside the brain.
Posted:Thu, 03 Oct 2013 06:00:00 EST
A team led by scientists from The Scripps Research Institute (TSRI) have shown that a protein once thought to inhibit the growth of tumors is instead required for initial tumor growth. The findings could point to a new approach to cancer treatment.
Posted:Wed, 02 Oct 2013 10:30:00 EST
Lend your support as we honor renowned cochlear implant surgeon J. Thomas Roland, Jr., MD who will receive the Eleanor Roosevelt Humanitarian Award.
Posted: Wed, 02 Oct 2013 10:00:00 EST
Canada’s first national public blood bank for umbilical cord blood is set to begin taking donations today at an Ottawa hospital. Canadian Blood Services says the National Public Cord Blood Bank will let the public donate instead of discard umbilical cords, which are a rich source of desperately needed stem cells.
Posted: Wed, 02 Oct 2013 09:00:00 EST
Forty-four extraordinary individuals from around the world have united to create the first non-clinical book about Neurofibromatosis Type 2 (NF2) in order to help and inspire others.
Posted: Wed, 02 Oct 2013 08:00:00 EST
To meet the demand for oxygen and nutrients, growing tumors induce the growth of new blood vessels in a process called angiogenesis. Antibodies directed against vascular endothelial growth factor (VEGF), which promotes angiogenesis, have been developed as a therapeutic strategy to limit tumor growth.
Posted: Wed, 02 Oct 2013 07:00:00 EST
We want to understand cancer and cure it. To do this we not only need the best scientific minds doing the very best research, but we need to find ways improve the way that research is carried out and remove barriers that are slowing down our progress.
Posted:Sat, 21 Sep 2013 11:00:00 EST
This prospective study aimed to determine speech understanding in neurofibromatosis type II (NF2) patients following implantation of a MED-EL COMBI 40+ auditory brainstem implant (ABI).
Posted:Sat, 21 Sep 2013 10:00:00 EST
Solit, an oncologist at Memorial Sloan-Kettering Cancer Center in New York City, delved into the case of a woman with advanced bladder cancer who volunteered for a 45-patient study of the Novartis drug Afinitor. He discovered that a combination of two gene mutations made her particularly receptive to the treatment, TSC1 and NF2.
Posted:Fri, 20 Sep 2013 10:00:00 EST
Temporalis muscle transfer produces prompt surgical results with a one-stage operation in facial palsy patients. The orthodromic method is surgically simple, and the vector of muscle action is similar to the temporalis muscle action direction. This article describes transferring temporalis muscle insertion to reconstruct incomplete facial nerve palsy patients.
Posted:Fri, 20 Sep 2013 09:00:00 EST
Scientists are finding links from multiple genomes to certain rare diseases, and now they’re beginning to investigate genetic variations to shed light on more common disorders.
Posted:Tue, 17 Sep 2013 09:00:00 EST
The Mayo Clinic celebrated the placement of its 1,000th cochlear implant over a 30 year span on Monday. Ritchie Hanson, 44, is the Minnesota man who received that landmark implant. He has neurofibromatosis type 2, a genetic disease that causes growth of noncancerous tumors in the nervous system.
Posted:Mon, 16 Sep 2013 13:00:00 EST
The Director of the Facial Paralysis Institute in Beverly Hills, Babak Azizzadeh, MD, FACS, responds to the recent development of a transparent artificial muscle from the researchers at Harvard University.
Posted:Mon, 16 Sep 2013 11:00:00 EST
Cody Kauzlarich has adapted well to the medical challenges of living with Neurofibromatosis type 2, a genetic disorder that has caused tumors on his spine and brain. He’s had radiation therapy as well as brain and spine surgeries, and an auditory brain stem implant improves his hearing.
Posted:Mon, 16 Sep 2013 10:00:00 EST
Perhaps one of the most uncomfortable things a doctor has to tell patients is that their medical problems are iatrogenic. What that means is they were caused by a doctor in the course of the treatment. Sometime these iatrogenic injuries are accidental. But sometimes, because of the limits of medical technology, they can be inevitable. Now, a medical researcher in Seattle thinks he has a way to eliminate some of the inevitable ones.
Posted:Wed, 11 Sep 2013 10:00:00 EST
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.
Posted:Sun, 08 Sep 2013 10:00:00 EST
Advocure’s quarterly newsletter is now available to view. This issue features a recap on CTF’s Monterey Conference, extraordinary NF2er Tracey Samuels and a special memorial for Rusty McCall, plus much more!
Posted:Sat, 07 Sep 2013 10:00:00 EST
A team of University of Michigan Medical School (Ann Arbor, MI) and Harvard University (Cambridge, MA) researchers are turning to stimulated Raman scattering (SRS) to enable much more accurate brain tumor surgery. Combined with microscopy, the technique could allow surgeons to distinguish cancer tissue from normal brain tissue at the microscopic level while they are operating, and avoid leaving behind cells that could spawn a new tumor.
Posted:Wed, 04 Sep 2013 20:00:00 EST
Sandler was one of the first patients to get a new type of minimally-invasive brain surgery at George Washington University Hospital. It combines a surgeon’s deft skill with the latest in fiber optic and computer technology.
Posted:Tue, 03 Sep 2013 13:00:00 EST
A team of University of California, Riverside researchers have developed a novel transparent skull implant that literally provides a “window to the brain”, which they hope will eventually open new treatment options for patients with life-threatening neurological disorders, such as brain cancer and traumatic brain injury.
Posted:Tue, 03 Sep 2013 11:00:00 EST
A team of researchers led by a Worcester Polytechnic Institute professor has received a 5-year, $3 million award from the National Institutes of Health to test a minimally invasive way of treating brain tumors.
Posted:Tue, 27 Aug 2013 11:00:00 EST
Johns Hopkins researchers say they have found a specific protein in nearly 100 percent of high-grade meningiomas—the most common form of brain tumor—suggesting a new target for therapies for a cancer that does not respond to current chemotherapy.
Posted:Tue, 27 Aug 2013 10:30:00 EST
Pubmed – Recent studies have established a requirement for the PAKs in the pathogenesis of Neurofibromatosis type 2 (NF2), a dominantly inherited cancer disorder caused by mutations at the NF2 gene locus.
Posted:Tue, 27 Aug 2013 10:00:00 EST
In their report receiving online publication in Nature Medicine, investigators from the Martinos Center for Biomedical Imaging at Massachusetts General Hospital (MGH), describe how their technique, called vessel architectural imaging (VAI), was able to identify changes in brain tumor blood vessels within days of the initiation of anti-angiogenesis therapy.
Posted:Sun, 18 Aug 2013 14:00:00 EST
Pubmed – Cucurbitacin D and goyazensolide, 2 plant-derived natural compounds, possess potent growth-inhibitory activity in schwannoma and meningioma cells.
Posted:Sun, 18 Aug 2013 11:00:00 EST
Is marijuana bad, or could it be good for some? CNN chief medical correspondent Dr. Sanjay Gupta spent a year traveling around the world to shed light on the debate.
Posted:Sat, 10 Aug 2013 11:00:00 EST
Neurosurgeons at The Ohio State University Wexner Medical Center are among the first in the United States to successfully implant an MRI-safe spinal cord stimulator to help patients suffering from chronic back or limb pain.
Posted:Sat, 10 Aug 2013 10:00:00 EST
Eating raw garlic twice a week can cut the chances of lung cancer by almost half, new research suggests. The results, published online Wednesday in the journal Cancer Prevention Research, showed those who ate raw garlic at least twice a week cut the risk of lung cancer by 44 per cent, even if they were exposed to high-temperature cooking-oil fumes, which is thought to be another trigger for the disease.
Posted:Thu, 08 Aug 2013 13:00:00 EST
Dr. Jeff Elias from the University of Virginia discusses brain tumors and focused ultrasound neurosurgery as a new treatment possibility.
Posted:Thu, 08 Aug 2013 08:00:00 EST
A 2013 study published in Neurology®, the medical journal of the American Academy of Neurology, offers evidence that following a Mediterranean diet may help protect the brain.
Posted:Thu, 08 Aug 2013 07:00:00 EST
The research record is often manipulated for short term gain but at the risk of harm to patients. The medical research community needs to implement changes to ensure that readers obtain the truth about all research, especially reports of randomised trials, which hold a special place in answering what works best for patients.
Posted:Wed, 07 Aug 2013 15:00:00 EST
In an effort to advance drug and disease research in children, a unit of the National Institutes of Health aims to fund studies of biomarkers of adult ailments for use in pediatric patients.
Posted:Tue, 06 Aug 2013 15:00:00 EST
Doctors need a way to target treatments to patients most likely to benefit and avoid treating those who will not. Tumor biomarker tests can help do this. The problem, according to a new commentary paper, is that, unlike drugs or other therapies, cancer biomarker tests are undervalued by doctors and patients.
Posted:Thu, 01 Aug 2013 15:00:00 EST
Almost every smartphone released of late supports hearing aid devices for people with hearing disabilities. However, the phones specifically targeted towards such users should comply to the Hearing Aid Compatibility (HAC) ratings as per the standards. In this article we have listed phones with compatible HAC ratings which have also got good ratings from expert reviews from around the web.
Posted:Tue, 30 Jul 2013 08:00:00 EST
Scientists searching for better painkillers are taking inspiration from an unusual population: people who feel no pain at all. Research has shown that rare mutations in a gene called SCN9A can give people complete immunity to pain. Now, pharmaceutical companies are aiming to develop drugs to mimic that genetic mutation.
Posted:Mon, 29 Jul 2013 08:00:00 EST
All cells need oxygen to survive, whether they’re healthy or cancerous. As a tumour grows bigger, oxygen levels inside it start to fall and the cells start to struggle. But some cancers, particularly aggressive and harder to treat forms of the disease, can evolve ways to get round this problem and continue thriving.
Posted:Mon, 29 Jul 2013 07:00:00 EST
Johns Hopkins researchers say they have discovered one of the most important cellular mechanisms driving the growth and progression of meningioma, the most common form of brain and spinal cord tumor. A report on the discovery, published in the journal Molecular Cancer Research, could lead the way to the discovery of better drugs to attack these crippling tumors, the scientists say.
Posted:Tue, 23 Jul 2013 20:00:00 EST
During the week of July 22 to 26, Q1 Productions will be making a donation to AdvocureNF2 with every registration received.
Posted:Tue, 23 Jul 2013 11:30:00 EST
Scientists have developed an “intelligent knife” that can tell surgeons immediately whether the tissue they are cutting is cancerous or not.
Posted:Tue, 23 Jul 2013 10:30:00 EST
Until recently, it was thought that cancer was caused only by abnormalities within genes themselves. Now, researchers have discovered that some types of cancers are caused by changes in our epigenes — a genetic code that sits on top of our DNA and affects the way that our genes express themselves. Epigenetic therapy may be able to treat some types of cancers, and it may also be able to prevent them from developing in the first place.
Posted:Tue, 23 Jul 2013 09:30:00 EST
Two leading pharmaceutical trade bodies planned to secure the support of patients’ groups to try to resist growing calls for much greater transparency of clinical trial data, it has emerged.
Posted:Wed, 17 Jul 2013 15:30:00 EST
The brain can do some amazing things and recent research into the effects of intermittent hearing loss has highlighted its impressive powers of adaptability, as well as the mechanisms it uses to locate sound.
Posted:Wed, 17 Jul 2013 14:30:00 EST
Daniel Radcliffe is among the celebrities giving a ‘thumbs-up’ this week to a campaign boosting deaf youngsters. The Harry Potter star can be seen signalling the message ‘good morning’ in British sign language in a number of busy Tube stations.
Posted:Wed, 17 Jul 2013 13:30:00 EST
Stanford researchers are on track to begin human trials of a potentially potent new weapon against cancer, and would-be participants are flooding in following the Post’s initial report on the discovery. The progress comes just two months after the groundbreaking study by Dr Irv Weissman, who developed an antibody that breaks down a cancer’s defense mechanisms in the body.
Posted:Wed, 17 Jul 2013 11:30:00 EST
To determine how radiation affects cognition, Vipan Parihar and Charles Limoli of the University of California, Irvine studied cranial irradiation in mice. They found that exposure to radiation causes degenerative changes to brain architecture similar to those observed in people with neurodegenerative conditions such as Alzheimer’s disease and Huntington’s disease.
Posted:Wed, 17 Jul 2013 10:30:00 EST
This fun event is a 1.6 mile walk involving funky wigs, great prizes, and food/drinks. Kim Walker and her family are holding this unique fundraising event on October 19, 2013 in Norwalk, Iowa to support AdvocureNF2 and NF2 Research!
Posted:Mon, 15 Jul 2013 11:30:00 EST
Hundreds of motorcycles drove all around Northern Michigan today to raise money and awareness for a good cause. 21-year-old Ashley Sexton from Mancelona died suddenly in 2007 from a rare disease but will never be forgotten.
Posted:Mon, 15 Jul 2013 10:30:00 EST
Every spring, some 30,000 oncologists, medical researchers and marketers gather in an American city to showcase the latest advances in cancer treatment.
Posted:Fri, 12 Jul 2013 10:30:00 EST
This Sunday, Tony DeMott of Staten Island will, in his own words, “step out of his comfort zone” and compete in the New York City Triathlon, swimming a mile in the Hudson River, biking 24 miles from Manhattan to the Bronx and back, and running 6.2 miles in Central Park. He is doing all this to fight a disease called neurofibromatosis (NF), particularly on behalf of Krissy Diaz, a 24-year-old who lives with NF and inspires Tony in this mission.
Posted:Wed, 10 Jul 2013 10:30:00 EST
Indiana University scientists have transformed mouse embryonic stem cells into key structures of the inner ear. The discovery provides new insights into the sensory organ’s developmental process and sets the stage for laboratory models of disease, drug discovery and potential treatments for hearing loss and balance disorders.
Posted:Wed, 10 Jul 2013 08:30:00 EST
Jennifer Monusko, 36, has a rare medical disorder known as neurofibromatosis type 2 (NF2). The disorder causes slow-growing tumors which may eventually spread throughout the body.
Posted:Wed, 10 Jul 2013 07:30:00 EST
Researchers were especially excited by a pair of studies published in the New England Journal of Medicine last week that showed a new type of anti-cancer drug, which works in an entirely different way from chemotherapy, helped leukemia patients tally up to an 83% survival rate after being treated for two years.
Posted:Tue, 09 Jul 2013 07:30:00 EST
A MANA research team has developed a new nanofiber mesh which is capable of simultaneously realizing thermotherapy (hyperthermia) and chemotherapy (treatment with anticancer drugs) of tumors. They succeeded in efficiently inducing natural death (apoptosis) of epithelial cancer cells.
Posted:Wed, 03 Jul 2013 07:30:00 EST
Women who use hormone replacement therapy have a 30 per cent higher risk of brain tumours, a study found. Researchers say the findings may explain why meningioma — the most common brain tumour — is found more frequently in women. It may also explain why cases have risen in recent years. The Danish Cancer Research Centre said: “Long-term HRT use, particularly of combined oestrogen-progestogen, may increase the risk of meningioma.
Posted:Wed, 03 Jul 2013 07:00:00 EST
White blood cells, key defenders in the body’s immune system, can activate cancer cells and help them spread, a new study by Montreal and Calgary researchers suggests. The findings likely explain why infection after surgery among cancer patients is associated with a higher death rate due to the spread of the cancer, the researchers reported in a paper published Monday in the Journal of Clinical Science.
Posted:Wed, 03 Jul 2013 06:00:00 EST
Researchers say they’ve discovered for the first time five regions on certain genes that may be behind a migraine’s onset. They hope the discovery can one day help people with migraines and other tough-to-treat neurological disorders.
Posted:Fri, 21 Jun 2013 10:30:00 EST
The BigBrain atlas, produced after a five-year effort, was hailed by neuroscientists as a technological tour de force that promises to speed discoveries in an increasingly important field. The work was reported in Friday’s edition of the journal Science.
Posted:Tue, 18 Jun 2013 10:30:00 EST
As preparations were underway in Northern Ireland for the 39th G8 summit, science ministers from the G8 nations met with their national science academies to discuss the most pressing issues in research facing scientists across the globe. Their recommendations will be put to the G8 leaders during talks today and tomorrow. Among them are decisive actions required to make scientific research more open and more accessible.
Posted:Tue, 18 Jun 2013 10:00:00 EST
Researchers in Germany have found a new way to exploit the differences between cancer cells and normal cells that could lead to new treatments. The discovery suggests that experimental drugs that target a protein called DNA-PKcs could be particularly effective in cancer patients whose tumours bear a specific fault, although this idea will need testing in clinical trials.
Posted:Tue, 18 Jun 2013 09:30:00 EST
For patients managing cancer and other chronic health issues, painkillers such as morphine and Vicodin are often essential for pain relief. The body’s natural tendency to develop tolerance to these medications, however, often requires patients to take higher doses — increasing risks of harmful side effects and dependency.
Posted:Tue, 18 Jun 2013 09:00:00 EST
Researchers at the University of California, Berkeley, have developed an easier and more effective method for inserting genes into eye cells that could greatly expand gene therapy to help restore sight to patients with blinding diseases ranging from inherited defects like retinitis pigmentosa to degenerative illnesses of old age, such as macular degeneration.
Posted:Tue, 18 Jun 2013 08:00:00 EST
Researchers in Spain have found that a drug used to control Type II diabetes can help repair the spinal cords of mice suffering from the inherited disease adrenoleukodystrophy which, untreated, leads eventually to a paralysis, a vegetative state and death. They believe that their findings may be relevant to other neurodegenerative diseases. A Phase II trial will be starting shortly.
Posted:Mon, 10 Jun 2013 11:00:00 EST
Ms. Negrin, who has coloboma, a birth defect that perforates a structure of the eye and afflicts about 1 in 10,000 people, is an employee at OrCam, an Israeli start-up that has developed a camera-based system intended to give the visually impaired the ability to both “read” easily and move freely.
Posted:Mon, 10 Jun 2013 10:00:00 EST
A new regulatory pathway established last year allows drugs with dramatic early clinical promise to be expedited to the market quicker than ever before. To date, most of these ‘breakthrough’ designations have gone to cancer agents, raising the prospect of faster access to the latest lifesaving therapies for the estimated 4,500 people newly diagnosed with cancer each day in the US. Elie Dolgin looks at what sets these breakthrough medicines apart.
Posted:Mon, 10 Jun 2013 09:00:00 EST
The early success of a new class of cancer drugs, revealed in test results released here over the last several days, has raised hope among the world’s top cancer specialists that they may be on the verge of an important milestone in the fight against the disease.
Posted:Mon, 10 Jun 2013 08:00:00 EST
Research Highlight: In this paper, we present a case of NF2, who was diagnosed on the basis of intracranial calcifications.
Posted:Mon, 3 Jun 2013 08:00:00 EST
Advocure NF2 is pleased to announce a research grant of $25 000 to award researchers whose work show promise in treating NF2. If you are a researcher in NF2, please apply now!
Posted:Mon, 3 Jun 2013 07:00:00 EST
The summer edition of our quarterly newsletter is now available for you to view.
Posted:Sun, 2 Jun 2013 11:00:00 EST
Abstract: Grade 2 meningiomas are a real problem in therapeutic management because of their tendency to reoccur. The most effective treatment is surgery. The role of adjuvant radiotherapy in this disease is still disputed due to its uncertain effect on progression-free survival.
Posted:Wed, 29 May 2013 11:00:00 EST
Medical researchers think specially tailored RNA sequences could turn off genes in patients’ cells to encourage wound healing or to kill tumor cells. Now researchers have developed a nanocoating for bandages that could deliver these fragile gene-silencing RNAs right where they’re needed.
Posted:Wed, 29 May 2013 10:00:00 EST
The aim of the study was to characterize the effect of HSP90 inhibition in various NF2-deficient models.
Posted:Sun, 26 May 2013 13:00:00 EST
Kuo and colleagues at Duke are interested in replacing lost neurons after a brain injury as a way to restore function. Once damaged, mature neurons cannot multiply, so most research efforts have focused on inducing brain stem cells to produce more immature neurons to replace them.
Posted:Sun, 26 May 2013 11:00:00 EST
When neurons fire together uncontrollably, epileptic seizures ensue. Yet what sparks the cells to go haywire in the first place? In January scientists found an unexpected answer. When glial cells in the cortex of fruit flies cannot properly control their calcium levels, they leave neighboring neurons vulnerable to seizures.
Posted:Sun, 26 May 2013 10:00:00 EST
New research from the University of Adelaide has shown for the first time that the growth of brain tumors can be halted by a drug currently being used to help patients recover from the side effects of chemotherapy. The discovery has been made during a study looking at the relationship between brain tumors and a peptide associated with inflammation in the brain, called “substance P”.
Posted:Sun, 26 May 2013 09:00:00 EST
Abstract: The aim of this study was to investigate and assess the benefit of treatment with bevacizumab in the treatment of patients with advanced NF2.
Posted:Sun, 26 May 2013 08:00:00 EST
A new measure of the heterogeneity – the variety of genetic mutations – of cells within a tumor appears to predict treatment outcomes of patients with the most common type of head and neck cancer. In the May 20 issue of the journal Cancer, investigators at Massachusetts General Hospital (MGH) and Massachusetts Eye and Ear Infirmary describe how their measure was a better predictor of survival than most traditional risk factors in a small group of patients with squamous cell carcinoma of the head and neck.
Posted:Sat, 18 May 2013 11:00:00 EST
The European Research Council (ERC) has awarded researchers at Barts Cancer Institute, Queen Mary University of London, a €2.43million grant for a project that aims to revolutionise the field of cancer cell research: using bioengineering techniques to grow the first complex 3D human tumour in the laboratory.
Posted:Sat, 18 May 2013 10:00:00 EST
Derrie Tustin, of Warndon, Worcester, has the rare life-changing condition neurofibromatosis type two (NF2), which causes nervous system tumours (lumps) in the brain and spine. Mother-of-one Miss Tustin, aged 25, says few people understand the disorder and she is determined to raise awareness on World Neurofibromatosis Day.
Posted:Thu, 16 May 2013 10:00:00 EST
Ally Hennessey is four years old and was born with NF and has now developed an inoperable brain tumor that is stealing her eyesight. But two weeks ago, the little girl joined a brand-new study involving a pill that might shrink these types of tumors.
Posted:Thu, 16 May 2013 09:00:00 EST
16 years after the amazing creation of Dolly the cloned sheep, researchers have realised the dream of producing human embryonic stem cells (hESCs) using a similar cloning technique. The landmark achievement revives the hope of being able to generate new tissues using a patient’s own cells, eliminating the risk of immune rejection.
Posted:Wed, 15 May 2013 09:00:00 EST
Google CEO Larry Page said on his Google Plus profile that he has a problem with his vocal cords that makes it difficult for him to speak and breathe occasionally. However, the executive emphasized that he’s fit enough to keep running the Internet’s most influential company.
Posted:Wed, 15 May 2013 08:00:00 EST
The stem cells came from Hannah’s bone marrow, extracted with a special needle inserted into her hip bone. They were seeded in a lab onto a plastic scaffold, where it took less than a week for them to multiply and create a new windpipe.
Posted:Tue, 14 May 2013 09:00:00 EST
A team of Tel Aviv University researchers, including Dr. Shimon Rochkind of TAU’s Sackler Faculty of Medicine and Tel Aviv Sourasky Medical Center and Prof Zvi Nevo of TAU’s Department of Human Molecular Genetics and Biochemistry, has invented a method for repairing damaged peripheral nerves.
Posted:Mon, 06 May 2013 10:00:00 EST
The CDMRP (Congressionally Directed Medical Research Program) is currently accepting applications for the 2013 NFRP (Neurofibromatosis Research Program) Awards. NF Researchers looking for funding opportunities are inclined to apply.
Posted:Mon, 06 May 2013 09:00:00 EST
The biopharmaceutical pipeline of new medicines contains a stunning range of innovative new treatment approaches that have the potential to save lives and improve patient health. A new report by Analysis Group, “Innovation in the Biopharmaceutical Pipeline: A Multi-Dimensional View,” examines the pipeline from several different angles to capture the breadth and focus of ongoing research and to describe the array of potential new treatments and cures for patients.
Posted:Mon, 06 May 2013 08:00:00 EST
Dominic Luciano is a professional, up-and-coming musician, photographer, videographer, music producer, and digital artist. He’s also living with Neurofibromatosis Type 2, a genetic disease that causes uncontrollable tumor growth on the brain and spinal cord, and has had three brain surgeries, one high-risk spinal surgery, and 24 months of chemotherapy as a result.
Posted:Fri, 03 May 2013 10:00:00 EST
A breakthrough bionic ear that can ‘hear’ radio frequencies beyond the range of normal human ears has been created by scientists at Princeton University. The researchers used a radical 3D printing technique to create the ear with the electronics of a hearing aid inside it.
Posted:Fri, 03 May 2013 09:30:00 EST
Operation to augment facial muscles should enable Joshua to overcome the effects off bilateral facial palsy. The Peterborough boy was born with bilateral facial palsy, caused by underdevelopment of the seventh cranial nerve, which controls movement of the facial muscles.
Posted:Fri, 03 May 2013 09:00:00 EST
According to an analysis of a national database of patients undergoing resection for acoustic neuromas, patients with neurofibromatosis type 2 (NF2) had a 220% increased risk for facial nerve dysfunction after surgery.
Posted:Tue, 30 Apr 2013 13:00:00 EST
Injection of human stem cells into mice with tumors slowed down tumor growth, researchers have found. Human mesenchymal stem cells (MSCs), isolated from bone marrow, caused changes in blood vessels supplying the tumor. This modification of blood supply seemed to impact tumor growth.
Posted:Tue, 30 Apr 2013 11:00:00 EST
The Catalan Institute of Oncology (ICO), the Germans Trias i Pujol University Hospital (HUGTiP) and the Institute of Predictive and Personalized Medicine of Cancer (IMPPC) have created the first multidisciplinary neurofibromatosis type 2 (NF2) unit in Spain.
Posted:Tue, 30 Apr 2013 10:30:00 EST
Sally was diagnosed in 1985 with neurofibromatosis2 (NF2) a chronic disease with complex considerations. The disease partially paralyzed the left side of her face and deafened her left ear after her first brain surgery in 1986 at 16-years-old.
Posted:Tue, 30 Apr 2013 10:00:00 EST
Although results do not seem to be as good as for patients with sporadic unilateral tumors, stereotactic radiosurgery has proven a safe, attractive, and effective management modality for NF2 vestibular schwannomas. An overview of the impact stereotactic radiosurgery has had in the management of these tumors is discussed.
Posted:Tue, 30 Apr 2013 09:00:00 EST
Get to know more about Mark Pyeatt, who is the nephew of Sen. Rand Paul and was mentioned during his speech on the Senate floor, April 25th, 2013.
Posted:Sat, 27 Apr 2013 13:00:00 EST
Sen. Rand Paul took to the Senate floor today to put a face on two orphan diseases: Neurofibromatosis Type 2 and Pulmonary Fibrosis. Orphan diseases are rare and likewise, their resources, treatments and cures are rare. In order to find cures, Sen. Paul believes the U.S. must clear regulatory obstacles by accepting foreign drug studies as our own. Below is the video and transcript of his speech.
Posted:Sat, 27 Apr 2013 11:00:00 EST
To evaluate the outcome of cochlear implantation (CI) in patients with vestibular schwannoma (VS). The study included five patients with NF2 and bilateral VS and two patients with sporadic unilateral VS.
Posted:Tue, 23 Apr 2013 13:00:00 EST
In a serendipitous discovery, scientists at The Scripps Research Institute (TSRI) have found a way to turn bone marrow stem cells directly into brain cells.
Posted:Tue, 23 Apr 2013 11:00:00 EST
Angiogenesis is the term used to describe blood vessel growth. Researchers are trying to understand and better control this complex process. Most recent research has focused on cancer. Tumours can’t grow to life-threatening size unless they’re adequately nourished by blood. Therefore, they produce substances called angiogenic factors that promote the growth of tiny blood vessels.
Posted:Tue, 23 Apr 2013 10:00:00 EST
Patching has long been used to treat a lazy eye in children, although the therapy has limited success and doesn’t work at all in adults with the condition formally known as amblyopia. Now researchers at McGill University in Montreal are testing an innovative means of improving visual function in adults with lazy eye — a puzzle video game that forces both eyes to work together to overcome the common condition.
Posted:Mon, 22 Apr 2013 13:00:00 EST
Deadline to request your Senators to support funding for NF Research is Wednesday, April 24, 2013. By filling the form with your contact information, an email will be sent to your Senators that federal funding for NF research is important to you!
Posted:Mon, 22 Apr 2013 11:00:00 EST
Nothing could have matched the joy Noah Roberts felt when his family told him he would get to attend the East Carolina University spring football game — except maybe for when he got to run the game’s final play. Back in 2010, Noah’s life was turned on its head when he and his family found out he had developed neurofibromatosis type 2 (NF2).
Posted:Sun, 14 Apr 2013 11:00:00 EST
A new, minimally invasive treatment that tears microscopic holes in tumors without harming healthy tissue is a promising treatment for challenging cancers, suggests a preliminary study being presented at the Society of Interventional Radiology’s 38th Annual Scientific Meeting in New Orleans.
Posted:Sun, 14 Apr 2013 10:00:00 EST
Aaron Coulter never set out to take his life during his partying phase in college, but he figured if it happened it happened. Already taking pain pills for his neurofibromatosis, type 2, a rare genetic condition in which nerve tissue grows tumors, he decided that, if the pharmaceuticals mixed with the alcohol he was drinking and he just never woke up, “I just [didn’t] care.”
Posted:Fri, 12 Apr 2013 10:00:00 EST
At the Cleveland Clinic, Dr. Michael Vogelbaum, associate director of the Brain Tumor and Neuro-Oncology Center, used an experimental technique, which helps the surgeon see the tumor better and remove more of it.
Posted:Thu, 11 Apr 2013 10:00:00 EST
Cancer Research UK scientists have developed a new way of looking at how tumours evolve in real-time and develop drug resistance by tracking changes in the patients’ blood, described in a study1 published in Nature.
Posted:Sat, 06 Apr 2013 10:00:00 EST
The first-in-human study of the NeuroBlate™ Thermal Therapy System finds that it appears to provide a new, safe and minimally invasive procedure for treating recurrent glioblastoma (GBM), a malignant type of brain tumor.
Posted:Thu, 04 Apr 2013 11:00:00 EST
Researchers are one step closer to uncovering a cancer treatment that could be applicable across the board in killing every kind of cancer tumor. After successful trials in mice, the cancer drug that so far has shrunk or cured all types of tumors it has been tested against will now move to human clinical trials, thanks to a $20 million grant.
Posted:Thu, 04 Apr 2013 10:00:00 EST
The NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative is part of a new Presidential focus aimed at revolutionizing our understanding of the human brain. By accelerating the development and application of innovative technologies, researchers will be able to produce a revolutionary new dynamic picture of the brain that, for the first time, shows how individual cells and complex neural circuits interact in both time and space.
Posted:Mon, 01 Apr 2013 11:00:00 EST
Imaging and Robotic technologies have the potential to help neurosurgeons perform precise, fast and more comprehensive testing of brain tissue during surgery, identification of cancer type, grade and tumor margins and help them navigate through the brain, according to Akash Singh, PhD.
Posted:Mon, 01 Apr 2013 10:00:00 EST
To many, ‘brain’ is the new ‘genome’. Having completed the big sequencing challenge of the nineties and early aughts, some political institutions seem ready to undertake another big and collective scientific endeavor—this time, to improve our understanding of how human brains work.
Posted:Thu, 28 Mar 2013 10:00:00 EST
Advocure awards $3000 to Prof Hanemann and his research team at Plymouth University, UK Professor Oliver Hanemann and his research team at Plymouth University, UK recently discovered how the loss of SOX10 function contributes to the phenotype of human merlin-null schwannoma cells. In recognition of these achievements and as part of our ongoing mission to strengthen and support NF2 research, Advocure has awarded Professor Hanemann and his team with $3,000.
Posted:Thu, 28 Mar 2013 09:00:00 EST
In March 2013, we announced a record £1.5million investment into ten ground-breaking research projects across the UK. Read more about eight of the projects we are funding below (two awards are still being finalised).
Posted:Thu, 28 Mar 2013 08:30:00 EST
Award-winning American actress Gillian Anderson has launched a national school’s competition to raise money for Children with Tumours. Gillian, the star of critically-acclaimed drama series The X-Files, will judge the charity’s annual Christmas Card Challenge which is open to all primary schools. Children with Tumours (CWT) is the UK’s first “no frills” charity which launched last year to help raise funds to provide holiday camps for children affected by the condition Neurofibromatosis and to contribute towards vital research.
Posted:Thu, 28 Mar 2013 08:00:00 EST
Canadian researchers say they are successfully treating patients with uncontrollable tremors using a new ultrasound technique that eliminates the need for invasive — and risky — brain surgery. Researchers from the Toronto Western Hospital and Sunnybrook Health Sciences Centre say early results show MRI-guided, high-intensity ultrasound technology can stop previously uncontrollable hand shaking, a condition known as “essential tremor.”
Posted:Sun, 24 Mar 2013 11:00:00 EST
Nerve mapping technology allows surgeons to determine whether surgery has been effective for relieving pressure from compressed nerves, which often function poorly and cause sciatica or pain and weakness in muscles supplied by the nerve.
Posted:Sun, 24 Mar 2013 10:00:00 EST
A study by researchers at Hospital for Special Surgery (HSS) challenges a widely held belief that long nerve grafts do poorly in adults with an axillary nerve injury. Investigators found that the outcomes of long nerve grafts were comparable to those of modern nerve transfers. Both procedures restored function. The axillary nerve supplies the deltoid muscle of the shoulder and an important rotator cuff muscle. It’s part of the brachial plexus, a network of nerves that runs down from the neck and across the shoulder.
Posted:Fri, 22 Mar 2013 13:00:00 EST
SMARTbucket is the newest fundraising effort for AdvocureNF2 with a goal to raise $100,000 by National NF2 day, May 22. SMARTbucket is a personally decorated and re-purposed paint can. It comes with flower seeds. Add dirt and water and watch a healthy life grow! 100% of its proceeds go to NF2 Research, get yours today!
Posted:Fri, 22 Mar 2013 11:00:00 EST
Kian Savile is celebrating after claiming two golds and two silver medals at the British Blind Sport School Games at Worcester. Savile’s achievement is a remarkable one. He went to the Dolphins three years ago with his younger sister for a trial. At the time of joining the club went through the administration details and found out that he had some ‘medical issues’. It was discovered he has a serious medical condition called ‘Neurofibramatosis type 2’ (NF2).
Posted:Fri, 22 Mar 2013 10:00:00 EST
West Hempstead resident Krissy Diaz, 25, suffers from a rare genetic disorder called neurofibromatosis Type II, or NF-2 for short. Her big brother, John, 27, a New York City Police Department officer in East New York, Brooklyn, wanted to do something to raise awareness of his sister’s disease — and to raise money for research, hoping that someday there will be a cure.
Posted:Thu, 21 Mar 2013 10:00:00 EST
Stem cells hold enormous potential for repairing or regenerating damaged tissue. But delivery of these cells to their target location remains a major obstacle. Now, researchers at the Stanford University School of Medicine in California have developed a novel nanoparticle-based system that allows stem cells to be tracked in real time in a living mouse for up to a year after injection. This work, if replicated in humans, could finally allow scientists to verify if these cells are going where they’re intended.
Posted:Tue, 19 Mar 2013 10:00:00 EST
Cancer experts from 15 countries last week published their reckoning of what it would take to combat the disease on a global scale. They highlighted the need for action and the scale of the problem — 12.7 million new diagnoses a year, more than half of them in developing nations — then ticked off a laundry list of developments needed to drive down that number, and to improve care for people with cancer.
Posted:Mon, 18 Mar 2013 10:00:00 EST
On 6 January, Vertex Pharmaceuticals of Cambridge, Massachusetts, announced that two of its cystic fibrosis therapies—Kalydeco (ivacaftor) taken alone or in combination with an experimental agent called VX-809—had received the first breakthrough designations under the FDA’s new program, which was codified into law in July 2012 as part of the reauthorization of the Prescription Drug User Fee Act.
Posted:Thu, 14 Mar 2013 13:00:00 EST
The Children’s Tumor Foundation is pleased to announce that a study led by Dr. Helen Morrison and CTF grant recipient Alexander Schulz has discovered a previously unknown mechanism for the peripheral nerve damage seen in NF2 patients.
Posted:Thu, 14 Mar 2013 11:30:00 EST
PROTEINS, carbohydrates and vitamins are all on the menu for a breastfed baby. Now it seems you can add stem cells to that list. Evidence is piling up that both breast milk and breast tissue contain embryonic-like stem cells. That might mean we will soon have access to a source of stem cells without destroying embryos.
Posted:Sun, 10 Mar 2013 11:00:00 EST
The management of patients with NF2 presents the clinician with a formidable challenge with many patients still presenting themselves late with the neurological compromise and a large tumour load. There is still an argument for the management by observation until the neurological compromise dictates interventional treatment particularly with the option of hearing rehabilitation with ABI or CI. The translabyrinthine approach provides a very satisfactory means of reducing the overall tumour volume.
Posted:Sun, 10 Mar 2013 10:30:00 EST
“With any brand new technology, you never know when the world will be ready for it.” So said Paul Boni, an analyst at Punk, Ziegel & Knoll, in 1998 (as quoted by the New York Times), after the US Food and Drug Administration (FDA) approved its first gene-silencing ‘antisense therapy’, a drug known as Vitravene (fomivirsen), for the treatment of cytomegalovirus infections in individuals with weakened immune systems.
Posted:Sun, 10 Mar 2013 10:00:00 EST
After years of decline in the public eye, drug companies should implment a bioethics accreditation or rating program to help appropriately restore the industry’s good name and improve its effectiveness in advancing global health and new treatments.
Posted:Thu, 7 Mar 2013 13:00:00 EST
The massive rise of patient advocacy in the US has led to an aggressive, if inadvertent, contest between disease-specific lobbyists. Advocacy groups say they’re just trying to get taxpayer-backed research dollars distributed equitably according to public health need and they deny any outright competition with one another. But with research budgets shrinking, advocacy becomes a zero-sum game.
Posted:Thu, 7 Mar 2013 11:30:00 EST
Some biologists would like to train patients’ own immune systems to treat diseases such as cancer and autoimmune disorders. They envision programming immune cells to destroy tumor cells or to stop immune system attacks on healthy tissue. Now a team of German researchers reports a method that traps immune cells in microscopic water droplets and exposes the cells to chemical signals that could teach them the difference between friend and foe.
Posted:Thu, 7 Mar 2013 11:00:00 EST
Anyone whose hand or foot has “fallen asleep” has an idea of the numbness and tingling often experienced by people with peripheral nerve damage. The condition also can cause a range of other symptoms, including unrelenting pain, stinging, burning, itching and sensitivity to touch.
Posted:Thu, 7 Mar 2013 10:30:00 EST
In 2009, Wisconsin clinicians sequenced all the protein-coding DNA of a very ill 4-year-old boy named Nicholas Volker. They used the results to pinpoint a gene mutation at the root of his life-threatening gut inflammation, as well as to identify a risky but ultimately effective treatment. Nicholas’s story was hailed as one of the first successes in the long-promised goal of using sequencing to steer clinical decisions. But as the approach proliferates in the treatment of rare genetic diseases, cancers and other areas of medicine, researchers say it’s time to change both the name and the framework of a field that for more than a decade has been termed ‘personalized medicine’.
Posted:Thu, 7 Mar 2013 10:00:00 EST
Using data drawn from queries entered into Google, Microsoft and Yahoo search engines, scientists at Microsoft, Stanford and Columbia University have for the first time been able to detect evidence of unreported prescription drug side effects before they were found by the Food and Drug Administration’s warning system.
Posted:Thu, 7 Mar 2013 09:30:00 EST
Opening speaker Shannon Brownlee identified “the different heads of the hydra” as “disease-mongering, conflict of interest, and overdiagnosis.” In her view, the challenge of this meeting was to identify these aspects of selling sickness and “weave them together in a systemic movement that promotes systemic changes.”
Posted:Thu, 7 Mar 2013 09:00:00 EST
Lipreading, which makes one sense do the work of another, is a skill daunting to describe. Rachel Kolb, ’12, deaf since birth, shares its mysteries.
Posted:Tue, 5 Mar 2013 13:00:00 EST
Advocure NF2’s newsletter, NF2 Compass, is a quarterly newsletter bringing you the latest news, research and exclusive interviews on NF2. Spring 2013 Issue is now available for your review.
Posted:Tue, 5 Mar 2013 11:00:00 EST
Presage Biosciences, a leader in discovering effective cancer drug combinations, today announced that it has entered into a strategic collaboration agreement with Celgene Corporation under which Presage and Celgene will take advantage of Presage’s proprietary technology platform to identify novel drug combinations for solid tumor indications.
Posted:Tue, 5 Mar 2013 10:00:00 EST
Researchers from Plymouth University Peninsula Schools of Medicine and Dentistry are part of an international team which has for the first time identified the role of a tumour suppressor in peripheral neuropathy in those suffering multiple tumours of the brain and nervous system.
Posted:Tue, 5 Mar 2013 09:00:00 EST
Leanna Scaglione, who was training to be a professional ballerina when she was diagnosed with Neurofibromatosis type 2, which affected her mobility due to a tumor and ended her training, will be speaking at the observance. Her disease is actually more common than Cystic Fibrosis and Muscular Dystrophy combined.
Posted:Wed, 27 Feb 2013 13:00:00 EST
Cureus (pronounced “curious”) is an “open source” online medical journal that shares material, is available and free to anyone, and allows researchers to publish their findings at no cost within days – rather than the months or even years it typically takes for research to be made public. It’s built on a “crowdsourcing” platform that allows readers to rate material based on the article’s quality, rather than the mere fact it was published in a prestigious publication.
Posted:Wed, 27 Feb 2013 11:30:00 EST
The Network Edge brings you quarterly updates on the latest neurofibromatosis (NF) research and clinical trial advances from recent scientific publications. Highlights: NF2 Clinical Management Updates, What’s New in NF2 Biology
Posted:Wed, 27 Feb 2013 11:00:00 EST
Sacred Heart Hospital is adding a new high-tech tool for non-invasive brain surgery, the Gamma Knife Perfexion. It uses finely-focused beams of radiation to target abnormalities in the brain without open surgery.
Posted:Wed, 27 Feb 2013 10:00:00 EST
Robbie Wilde thumbs through his iPhone as the sounds of voices and clinking glasses bounce all around him. His eyes never leave the phone’s screen. During New York Fashion Week, Wilde, 27, passes the time with friends and management at an exclusive party in Hell’s Kitchen before taking over the turntables. Wilde lives in a world of rhythm and bass. He just can’t hear it.
Posted:Wed, 27 Feb 2013 09:00:00 EST
The total number of cell phone subscriptions worldwide has been estimated as 5 billion. Irrespective of the age group, everyone carry around these small devices which come with a lot of conveniences. However, we keep on hearing that cell phone users might be at a risk for regularly using their devices.
Posted:Fri, 22 Feb 2013 13:00:00 EST
A new approach exploits an Achilles’ heel of the innate immune system. Despite their veracious appetite, macrophages are discriminate consumers because they recognize a specific “don’t eat me” signal on the surface of our own cells, represented by a protein called ‘cluster of differentiation 47’, or CD47. On the basis of this insight, Dennis Discher, a biochemist at the University of Pennsylvania School of Engineering and Applied Science in Philadelphia, and his team devised a new way to get these nanoparticles past the body’s immune defenses.
Posted:Fri, 22 Feb 2013 11:30:00 EST
Cancer Research UK scientists have honed techniques originally developed to spot distant galaxies and used them to identify biomarkers that signal a cancer’s aggressiveness among some 2,000 breast tumours, in a study published in the British Journal of Cancer.
Posted:Fri, 22 Feb 2013 11:00:00 EST
Radiation from dental imaging has attracted more controversy in recent years as computed tomography (CT) scans become more common in dentistry and as more becomes known about radiation’s long-term effects. A study published in the September 2012 issue of Cancer showed an association between dental X-rays and incidence of meningioma, a common benign brain tumor. Three letters published in the January issue of the journal challenged the findings. Beyond schedules for when to administer routine X-rays, the new ADA-FDA guidelines provide specific instructions for limiting patients’ exposure to radiation.
Posted:Fri, 22 Feb 2013 10:30:00 EST
Surgical removal of tumors is an inexact science, requiring physicians to feel, visually analyze, and compare tissue sections to pre-op imaging. In brain operations in particular it is of utmost importance to remove the whole tumor while avoiding damaging any healthy tissue. In theory pathological examination may work, but it is so time consuming that it’s impractical in reality to wait a half hour for results on every sample. Researchers at Purdue University have developed a new technique that uses desorption electrospray ionization mass spectrometry (DESI-MS) to measure lipid content of tissues and using that characterize them as healthy or cancerous.
Posted:Fri, 22 Feb 2013 10:00:00 EST
With the installation of the new system, the Munich center, in close cooperation with the University Hospital of Munich, is the first to offer cancer patients treatment with the CyberKnife M6 System, the latest generation of the CyberKnife System. The new System is now able to provide enhanced quality, a streamlined user interface for treatment delivery and precision to radiation therapy treatments and continues to provide clinical capabilities including non-isocentric, non-coplanar robotic beam delivery and real-time tracking and automatic correction.
Posted:Fri, 22 Feb 2013 09:00:00 EST
Global Markets Direct’s, ‘Meningioma – Pipeline Review, H2 2012’, provides an overview of the indication’s therapeutic pipeline. This report provides information on the therapeutic development for Meningioma, complete with latest updates, and special features on late-stage and discontinued projects. It also reviews key players involved in the therapeutic development for Meningioma.
Posted:Fri, 15 Feb 2013 14:00:00 -0400
CTF is accepting applications for Synodos, an application-based consortium focused on highly collaborative, interdisciplinary translational research. The end goal of this effort is to fund new approaches to the diagnosis and treatment of two primary NF2-related tumors: vestibular schwannoma and meningioma. The consortium is in effect for three years (2013-2015), and will fund $2 million of NF2 research.
Posted:Tue, 12 Feb 2013 15:00:00 -0400
House Research Institute (HRI) is recruiting patients for a Phase II clinical trial to test a medication that may slow the progression of Neurofibromatosis Type-2, commonly referred to as NF2. The clinical trial is investigating the medication RAD001 (everolimus), an analog of Rapamycin, to see if the drug is effective in slowing the growth of the vestibular schwannomas in NF2 patients.
Posted:Tue, 12 Feb 2013 14:00:00 -0400
Scientists who built a synthetic gene circuit that allowed for the precise tuning of a gene’s expression in yeast have now refined this new research tool to work in human cells, according to research published online in Nature Communications.
Posted:Tue, 12 Feb 2013 13:30:00 -0400
Nutley resident Daria Weedo will have a special wish before she blows out her birthday candles on Sunday. A wish for restored health. Weedo is among 17 family members diagnosed with neurofibromatosis type 2, a genetic disorder, and will be undergoing surgery in New York next Wednesday. Jarets Stuffed Cupcakes is hosting a fundraiser for Daria Weedo from 10 am to 5pm, Sunday at 231 Franklin Ave in Nutley.
Posted:Tue, 12 Feb 2013 13:00:00 -0400
A first of its kind research and awareness event for a genetic condition will take place at Manchester Metropolitan University on February 15. Key researchers, geneticists and those who suffer from Neurofibromatosis (NF) will come together for the free one-day event to share knowledge about condition.
Posted:Tue, 12 Feb 2013 11:00:00 -0400
InSightec is the pioneer and global leader in MR guided Focused Ultrasound Surgery (MRgFUS) . InSightec developed ExAblate, a product which pioneers the use of MRgFUS, and provides a personalized non-invasive treatment that can replace invasive procedures and offer therapeutic alternatives to millions of patients with serious diseases around the globe. Interview with Technion alumni Dr. Kobi Vortman, Founder and President and Baruch Avruch, Vice President of Operations from InSightec.
Posted:Tue, 12 Feb 2013 10:00:00 -0400
This story begins with a group of people who are expert at looking: the professional searchers known as radiologists. “If you watch radiologists do what they do, [you’re] absolutely convinced that they are like superhuman,” says Trafton Drew, an attention researcher at Harvard Medical School. But radiologists still sometimes fail to see important things, and Drew wanted to understand more. Because of his line of work, he was naturally familiar with one of the most famous studies in the field of attention research, the Invisible Gorilla study.
Posted:Mon, 11 Feb 2013 10:00:00 -0400
Charging for the right to dress casually serves several purposes, said principal Renee Salazar-Garcia of Tony Hillerman Middle School. For instance, the $500 raised from this particular day is earmarked for a neurofibromatosis type II fund created by Hillerman eighth-grader Jordon Vaughan, who has been fighting the rare condition for half his life. The money will go toward research.
Posted:Thu, 7 Feb 2013 10:00:00 -0400
Meningiomas the commonest tumour affecting the brain and spine occur in people affected by the genetic disorder Neurofibromatosis 2 (NF2). Using powerful DNA technology called Next Generation Sequencing, the team checked all genes of three individuals with multiple spinal meningiomas identifying changes in a gene called SMARCE1. The findings have been published in Nature Genetics http://www.nature.com/doifinder.10.1038/ng.2552
Posted:Mon, 4 Feb 2013 10:00:00 -0400
A distinct polyneuropathy (PNP) syndrome affects up to 66 % of patients with neurofibromatosis II (NF2). Whether this is primarily a diffuse PNP or due to single, surgically amenable mass lesions has not yet been conclusively demonstrated. We aimed to solve this question by investigating the pathomorphological MR imaging correlate of this rare disorder.
Posted:Tue, 29 Jan 2013 10:00:00 -0400
The NF Network is pleased to provide an informational booklet for patients and parents of NF2. Written by Advocure’s own John and Linda Manth, with help from Dr. Plotkin and support from Ashley Sexton’s family and friends. Cover photo featuring John and Linda’s daughter Leah.
Posted:Tue, 29 Jan 2013 10:00:00 -0400
Sleeping pills are hardly the only medications that may have unexpected, even dangerous, effects in women. Studies have shown that women respond differently than men to many drugs, from aspirin to anesthesia. Researchers are only beginning to understand the scope of the issue, but many believe that as a result, women experience a disproportionate share of adverse, often more severe, side effects.
Posted:Tue, 29 Jan 2013 10:00:00 -0400
Unlike the brain and spinal cord, the peripheral nervous system has an astonishing capacity for regeneration following injury. Researchers at the Max Planck Institute of Experimental Medicine in Göttingen have discovered that, following nerve damage, peripheral glial cells produce the growth factor neuregulin1, which makes an important contribution to the regeneration of damaged nerves.
Posted:Sun, 27 Jan 2013 10:00:00 -0400
The European Commission has selected the two research proposals it will fund to the tune of half-a-billion euros each after a two-year, high-profile contest. The Human Brain Project, led by neuroscientist Henry Markram at the Swiss Federal Institute of Technology (EPFL) in Lausanne, plans to simulate everything known about the human brain in a supercomputer.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
The Cupid’s Undie Run, a 1½-mile run in your underwear, will debut in Chicago this Valentine’s Day weekend. Chicago is one of 17 cities hosting the run this year. All proceeds benefit the Children’s Tumor Foundation, an organization dedicated to ending neurofibromatosis through research.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
Local Dream Factory grants Mexico teen’s wish to meet Dallas Cowboys Cheerleaders. Mexico High School freshman Arion VanVactor has “Neurofibromatosis 2,” a genetic disorder in which tumors form on the nerves of the brain and spine (the central nervous system). Dream Factory, Inc., is an organization granting dreams to children with critical and chronic illnesses who are 3 through 18 years of age. Arion was dream 196 for the Audrain County Dream Chapter.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
Nearly the entire genetic landscape of the most common form of brain tumor can be explained by abnormalities in just five genes, an international team of researchers led by Yale School of Medicine scientists report online in the Jan. 24 edition of the journal Science. Knowledge of the genomic profile of the tumors and their location in the brain make it possible for the first time to develop personalized medical therapies for meningiomas, which currently are only managed surgically.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
Large-scale genomic sequencing has revealed two DNA mutations that appear to drive about 15 percent of brain tumors known as meningiomas, a finding that could lead to the first effective drug treatments for the tumors, report scientists from Dana-Farber Cancer Institute and the Broad Institute.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
Researchers from MIT have now found a safe and efficient way to get large molecules through the cell membrane, by squeezing the cells through a narrow constriction that opens up tiny, temporary holes in the membrane. Any large molecules floating outside the cell – such as RNA, proteins or nanoparticles – can slide through the membrane during this disruption.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
Researchers from Memorial Sloan-Kettering Cancer Center (New York, NY) have found that tumor “separation surgery” followed by high-dose hypofractionated stereotactic radiosurgery (SRS) or high-dose single-fraction SRS is safe and effective in controlling spinal metastases regardless of the radiosensitivity of the particular tumor type that has invaded the spine.
Posted:Fri, 25 Jan 2013 10:00:00 -0400
A painkiller made from snake venom may sound like an unlikely invention, but a study suggests it could herald a new chapter in pain relief. Researchers say certain compounds isolated from the venom of the deadly black mamba snake are actually potent painkillers. In the study, these compounds produced pain relief as strong as morphine in mice, without the unwanted side effects associated with opioid pain relievers. It is too early to say whether the same will hold true in humans.
Posted:Wed, 23 Jan 2013 10:00:00 -0400
A Nigerian immigrant’s dream came true when President Barack Obama signed into law a rare private bill granting him permanent residency in the Unites States. Victor Chukwueke, who lives in Michigan on an expired visa, came to the United States 11 years ago to undergo treatment for massive face tumors. He suffers from neurofibromatosis, a genetic disorder that causes massive life-threatening tumors on his face.
Posted:Mon, 21 Jan 2013 10:00:00 -0400
Patients with neurofibromatosis type 2 (NF2) develop bilateral cochleovestibular schwannomas (CVSs) that cause binaural deafness in most individuals. Hearing loss occurs in an unpredictable manner and the underlying mechanisms are not known. To gain insight into the pathophysiologic basis for hearing loss in NF2, we performed a prospective cross-sectional study of untreated ears in NF2 patients.
Posted:Sun, 20 Jan 2013 10:00:00 -0400
In each cell, thousands of regulatory regions control which genes are active at any time. Scientists at the Research Institute of Molecular Pathology (IMP) in Vienna have developed a method that reliably detects these regions and measures their activity.
Posted:Fri, 18 Jan 2013 10:00:00 -0400
When Ameliana was diagnosed with a rare medical condition — one that took away her sense of hearing, and even led to her getting clinical depression — Damian never once gave up on her and stood strong by her side throughout the entire ordeal.
Posted:Mon, 14 Jan 2013 10:00:00 -0400
A research team from Plymouth University Peninsula Schools of Medicine and Dentistry have moved one step nearer a non-surgical therapy, by identifying for the first time a new group of growth factor receptors that signal to brain tumours.
Posted:Sat, 12 Jan 2013 10:00:00 -0400
Just a few years ago, Miyuki Ara loved playing the flute and was a fan of Tohoshinki, a South Korean male pop group. But today, the 24-year-old university student in Tokyo is struggling to make a new life for herself in a world without light and sound. Ara developed neurofibromatosis type 2, a genetic disorder that causes noncancerous tumors to grow in the nervous system, and lost her hearing in the fall of 2010. In the spring of the subsequent year, she lost the sight in both her eyes.
Posted:Sat, 12 Jan 2013 10:00:00 -0400
Neurofibromatosis type 2 protein (NF2) has been shown to act as tumor suppressor primarily through its functions as a cytoskeletal scaffold. However, NF2 can also be found in the nucleus, where its role is less clear. Previously, our group has identified JC virus (JCV) tumor antigen (T-antigen) as a nuclear binding partner for NF2 in tumors derived from JCV T-antigen transgenic mice. The association of NF2 with T-antigen in neuronal origin tumors suggests a potential role for NF2 in regulating the expression of the JCV T-antigen. Here, we report that NF2 suppresses T-antigen protein expression in U-87 MG human glioblastoma cells, which subsequently reduces T-antigen-mediated regulation of the JCV promoter.
Posted:Sat, 12 Jan 2013 10:00:00 -0400
A new Investigative Ophthalmology & Visual Science (IOVS) article reveals that increasingly aggressive therapies that block VEGF (Vascular endothelial growth factor) could cause damage in treating eye diseases. Scientists discovered inhibiting anti-VEGF might have a harmful effect on the tissue responsible for producing the fluid that bathes the eye, medically termed the ciliary body.
Posted:Thu, 10 Jan 2013 10:00:00 -0400
On January 9, 2013, Dr Asthagiri presented a “NF2 Natural History Study” Webinar at the website, NFnetwork.org. This webinar provided latest updates to his research on NF2 at the NIH (National Institute of Health), and can be downloaded to view in full at The NF Network. Captioning included.
Posted:Sat, 05 Jan 2013 10:00:00 -0400
Allicin, alliin, and a garlic extract were tested on solid and ascites mouse tumors carried in proper hosts. Preincubation of certain concentrations of enzymatically prepared allicin with tumor cells resulted in complete inhibition of tumor growth. Note, the full research paper can be found in a pdf file.
Posted:Sat, 05 Jan 2013 10:00:00 -0400
METHUEN — Gary Morello, a court officer in Lowell District Court, and his 6-year-old son, Gavin, suffer from a genetic disorder called neurofibromatosis. This is a disorder that causes tumors to grow in the nervous system. The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.
Posted:Sat, 05 Jan 2013 10:00:00 -0400
Dr. Anthony Atala pioneered the field of regenerative medicine as the first to successfully engineer, grow and implant a human organ. Now he is using 3d printers to make kidneys, hearts, and many other tissues and organs. All from the patients own cells.
Posted:Sat, 05 Jan 2013 10:00:00 -0400
Research led by Paola Leone, PhD, of the University of Medicine and Dentistry of New Jersey-School of Osteopathic Medicine (UMDNJ-SOM), demonstrates the long term safety and benefit of a virus-based gene therapy that has been applied for the first time in a clinical setting.
Posted:Sat, 05 Jan 2013 10:00:00 -0400
Five years ago, I was training to become a professional ballerina. Continual pain in my thigh while dancing brought me to an orthopedist who discovered a tumor the size of a melon in my lower spine, and I wound up being diagnosed with Neurofibromatosis Type 2 (NF2). I was 16 years old.