NF2 is a genetically determined disorder which affects one in 40,000 individuals worldwide. It is clinically distinct from NF1 and is ten times less common. Individuals with NF2 will not develop NF1, and those people born with NF1 will not progress to NF2.
One of the frustrating aspects of NF2 is its variation from individual to individual. In this regard, the medical problems and the time course of NF2 may be different, even in members of the same family..
In general, most individuals with NF2 experience their first symptoms during the late teenage years or in their early 20’s. A few people develop symptoms in childhood and some do not have problems until their 40’s or 50’s..
Affected individuals develop many nervous system tumors that may require treatment. Since the tumors grow slowly, they may be present for many years before causing symptoms. For that reason, NF2 should be evaluated at least annually for tumors, hearing and cataract formation. The optimal and recommended approach involves evaluation by a multidisciplinary team of specialists who can provide a diverse and expanded-level of expertise on this condition.

Healthcare flooring tips

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The clinical industry - hospitals be it, rehabilitation facilities, doctor’s and dentist’s offices, or clinics - has a minumum of one requirement in keeping: quality, healthcare flooring. In a business where every physical element must be chosen both for utility and aesthetics mindfully, the proper healthcare flooring option is essential. These healthcare facilities talk about our objective and ideals for only using the best health care flooring with design, quality, innovation and durability in mind.
Design - Quality health care flooring isn't just about utility - its features includes how aesthetics create a person feel. Waiting lobbies and areas should feel safe and homey. Our healthcare flooring can help decrease the stress of extended hours and often-averse conditions that want extended stays. It is ideal for larger healthcare installations also.
Quality - Quality means a lot of things. In our situation, it means everything. Aspects such as noise, comfort when walking and standing up, as many healthcare companies do all full day, and safe ease of use are assets. Comfort for all those interacting with health care flooring will be of the upmost significance. On our flooring:
Health may be the key issue; floors are cleanable highly, hygienic and asbestos-free.
Wheeling a gurney, IV stand or wheelchair will be smooth and effortless.
Voices, footsteps along with other sounds are absorbed rather than reflected too loudly.
Slip resistance will be paramount. Our vinyl floors are created using slip-resistant materials.
These are just some of our quality requirements - ones that people exercise and uphold in every of our health care flooring products. Our high quality is in the comfort and safety.
Durability - Durability can be an essential quality in every of our products. With many facilities requiring night and day machine and foot visitors, healthcare flooring is among the most used programs of vinyl flooring heavily. For this good reason, we style our flooring to have a beating. And when repair is necessary, we craft our item with easy maintenance at heart.
Development - We innovate by merging the best of each possible healthcare flooring element. Not merely are our products long lasting, comfortable, sanitary and safe, they bring comfort and ease to those with them. We bring elegance to utility by crafting our designs from an performer’s perspective carefully.

Tips about laboratory outreach business

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laboratoryLaboratory outreach applications have become increasingly vital that you hospitals because the US healthcare program undergoes monumental changes inside its reimbursement and regulatory scenery. To remain competitive in this atmosphere, pathology laboratories must deliver an increased level of customer support, share critical lab info with their customers, and react to changes of their practice patterns quickly. Outreach laboratory solutions can maximize hospital income, as well as the relationship between your hospital and its own physician community strengthen.
Exactly what is a laboratory outreach business?
Hospital and health program laboratories can offer value to healthcare companies and patients by giving outpatient laboratory testing solutions. This is known as laboratory outreach. Laboratory outreach companies strive to make laboratory testing more available for companies, physicians, and individuals by giving convenient locations for individuals to get their studies done, commonly known as patient service facilities (PSCs). A healthcare facility or health program’s primary laboratory or laboratories usually support the outreach company.
The role of analytics in laboratory outreach
Numerous laboratories have outreach programs with rigid service levels agreements (SLAs) and support level expectations (SLEs), but may lack the various tools had a need to actively monitor each support requirement. These requirements
 are often unhappy due to the guide and cumbersome processes connected with obtaining the necessary information to monitor outreach attempts. Advanced analytics options enable laboratories to rapidly determine outliers in turnaround period (TAT) and other high quality metrics in the laboratory, and also drill down into the main factors behind those outliers. Because of these crucial insights, laboratories can react to and resolve problems immediately, before customers identify the problem even.
Analytics equipment enable laboratories to quickly extract also, analyze, and share info such as for example customer ordering patterns, populace and volumes health analyses. Laboratories will not only provide huge insight to clients on the lab testing, but where you can find opportunities for better individual care also. Through sharing insightful info, laboratories can deepen relationships making use of their customers and grow the business enterprise.
Ensuring laboratory outreach success
It’s not quick to create, maintain and grow an effective outreach program. However, getting the right solutions set up enables laboratories to reach your goals in this initiative.

Collaborative Family Law

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collaborative_lawCollaborative Family Law is really a problem-solving process that provides divorcing parties and their lawyers a method to end a wedding and restructure families minus the stress, delay, and expense of litigation. Collaborative family law is usually founded on 3 principles: · a pledge never to litigate disputes in court · an truthful, voluntary, prompt, and good-faith exchange of related information without formal discovery · a commitment to shoot for solutions that look at the highest priorities of both events and their children. Although a commitment is shared by the lawyers to collaborative law concepts, each lawyer includes a professional duty to symbolize his / her own client diligently, and isn't the attorney for another party. Is Collaborative Law correct for me personally and my spouse? The collaborative process is for couples who would like a respectful end with their marriage with regard to all family. Ultimately, you must function as judge of another person's honesty and integrity, and also be accountable for your personal. If the next things are important for you, Collaborative Law may be the best procedure for you. · You seek a new respectful, creative and personal process for closing your marriage. · You desire to retain control on the decisions that may effect your lives after and during your divorce. · You recognize the possible need for future relationships even with divorce. · You believe that it is important to protect kids from the damage that parental conflict may inflict. · You place a higher value on personal obligation for controlling conflict with integrity. The Collaborative Family Legislation Center struggles to provide services in case you are unable to locate your partner or in case you are unable or even unwilling to sit at a table together with your spouse to go over difficult issues or even in cases involving domestic violence or even child abuse. Is Collaborative Practice a new faster solution to get a divorce? Individual circumstances regulate how any divorce process proceeds quickly. However, Collaborative Practice can be a more efficient and direct type of divorce. Right away, it targets problem solving, not blaming or airing grievances endlessly. Full disclosure and open up communications help to ensure that all pressing problems are discussed regularly. Lastly, because settlement is arrived at out of court, there is absolutely no looking forward to the multiple courtroom appointments which may be necessary with standard divorce.

How to make your Home healthy by Termite Removal?

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The list following indicates common signs of a subterranean termite infestation. It is suggested that you possess your home thoroughly inspected by way of a pest control expert trained to identify the sometimes subtle indicators of termites.
·    The existence of mud-like materials that ranges the galleries within an irregular pattern.
·    Termites may excavate the solid wood so that just a very thin coating of solid wood is left at first glance of the cavity and the exterior. This coating is broken then; they will cover up the holes with mud like materials, used to help make the tubes. This is a combination of soil, feces, and saliva.
·    Swarmers: The looks of a swarm of what you will call "flying ants",near light sources This means that a nest could be near especially. A "swarm" is really a group of adult man and woman reproductives that keep their nest to determine a fresh colony. Swarming occurs whenever a colony reaches a particular dimension. Swarming is most typical in the springtime (March, April, Might, and June) and sometimes autumn (September and October).
·    Most swarmers emerge throughout the day, most on warm times after rain frequently. Swarmers found outside near tree stumps, railroad ties, etc., aren't an indication your home is infested but can be found externally only. However, finding swarmers indoors means that you have a termite infestation in your own home often. At first glance, ants and swarmers look comparable, but could be distinguished by particular physical features. At Variations between termites and ants, there exists a list and picture of differences.
·    Mud Tunnels: Subterranean termites maintain their headquarters inside the ground and develop "mud tubes", pencil-dimension, that connect the nest (moisture) to the meals source (wood).The tunnels might contain broken mud particles with fecal components. Mud shelter or tubes are proof termite infestation, but their absence will not mean that a structure is free from termites necessarily. The bugs may reach sills along with other wood users through voids or cracks in the building blocks wall, beneath the outside stucco, or from earth-filled porches, actions, terraces, or patios. It is possible to break open tubes to find out if termites are active inside still. Termites rebuild damaged tubes often, another indication of carried on exercise. Old tubes are dried out and can crumble easily.
·    Subterranean termites construct 4 forms of tubes or tunnels. Functioning tubes (left) are made of nests in the soil to wooden structures; they could travel up stone or concrete foundations. Exploratory and migratory tubes (middle) occur from the soil but usually do not hook up to wood structures. Fall tubes (correct) lengthen from wooden structures back again to the soil.
·    Piles of wings: The lose wings of swarmers indicate termites possess entered their following phase of development.
·    Live life termites: Reproductive kings and queens are usually 1/2" long, dark and winged or brown in color. Workers are usually sterile and generally hidden within infested solid wood. They're 1/4" long, white and wingless. However, the lack of finding live life termites will not mean that they're not within the structure.
·    Buckling paint or microscopic holes on the wood.
·    Damaged wood: Wood can happen crushed at structural bearing factors. Termite damaged solid wood resonates with a boring thud (hollow audio)when tapped with a hammer. Pick and choose and probe the top of an infested little bit of solid wood with a pen knife and you may find tunnels operating parallel to the wood's grain.
·    Obtaining termites in a new structure will not mean you possess an immediate emergency as the rate of which damage occurs will be relatively slow.

Hives Symptoms and Treatment

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hivesHives, called urticaria by physicians, is among the most common factors behind skin inflammation. Around 20% of the population are affected from urticaria at least one time in their lives.
Hives are itchy, red rashes that rise and disappear completely quickly up, to be replaced by others sometimes. A few people discover that the problem recurs or lasts a lot more than 6 weeks.
In this article you will find hives symptoms and treatment as well as causes of hives.
Causes of Hives
Hives appear as a new reaction to an exterior irritant that's ingested or touches the skin. In reaction to the irritant, the physical body releases chemicals such as for example histamine that cause itching and inflammation. Irritants can include food items, medications, cosmetic items, insect stings, chemicals, attacks, and medical problems, and contact with extreme heat or chilly even.
In a minority of individuals with hives, an obvious allergic link could be proven. They create rashes after eating food items, taking certain medicines, or becoming stung by an insect.
Coffee, alcohol, and tobacco are defined as triggers of acute assaults of hives rarely, but people who have problems with chronic hives report these substances make their symptoms worse often.
If you get yourself a rash from medicines or food, it may not function as primary ingredient that's evoking the problem. It may be a preservative or some other additive. For instance, if a number of different medications and foods appear to give you hives, you might be reacting to tartrazine, a colouring agent used in pills and meals frequently.
Cosmetics, soaps, perfumes, and lotions could cause reactions also. Often, this can only occur once you switch to a fresh type. This may ensure it is less difficult to identify the reason for your hives. Other typical irritants are nickel inside jewellery and inside gloves or condoms latex.
Allergic urticaria may be the true name directed at hives caused by allergies to food, insect bites, medications, or makeup. Other styles are due to physical discomfort, such as sunlight, chilly, or rubbing of your skin. While we don't contact these kinds allergic, the underlying process is a lot the same.
Hives due to sunlight (photosensitive urticaria) might not look like an allergic situation at first sight, however the evidence suggests it really is. People have become delicate to lighting after receiving the bloodstream item immunoglobulin from others with this particular rare condition.
The same will additionally apply to hives caused by winter. It appears likely that the bloodstream of people with one of these conditions carries irregular immune cells. These tissues attack when met with chemicals that are usually released in your skin by cold, sunlight, or various other external circumstance.
Dozens of infections could cause hives, including throat, belly, and genital or even urinary (genitourinary) tract attacks; fungal attacks; mononucleosis; and hepatitis. The normal cold causes hives in children. Hives aren't directly due to the infectious organism, as in chickenpox or cellulitis. Rather, they're due to "pleasant fire" from the human being body's own defences.
Other triggers frequently connected with hives include:
friction - about 5% of the population are inclined to developing pores and skin rashes after mild rubbing or scratching of your skin; this condition is named dermatographism. Repetitive scratching of the hives may worsen the problem
swimming, that may cause severe reactions fairly, probably more because of the chilly than to the drinking water
exercise, stress, and very hot showers, which cause a type of hives called cholinergic urticaria
stress from belts, straps, and elastic, causing pressure urticaria
pregnancy - hives frequently appear late in pregnancy
Chronic or recurring hives might mean you're being repeatedly subjected to a trigger, or it may be an indicator of underlying disease. Lupus, arthritis rheumatoid, and thyroid problems are diseases more likely to trigger hives to appear.
Complications and symptoms of Hives
Hives itchy are, red welts on your skin. They could join together to create one large rash or could be spread out to create several smaller types. They're often big and slightly raised. The advantage of the rash is frequently the most inflamed component, with the center being paler in color. There might be discomfort or burning of itching instead.
Acute hives usually final only 24 hours in confirmed location on your body; bouts of severe hives can last around 6 days. Chronic hives can final for a lot more than 6 days. Most cases however, last about a week.
Occasionally the rash is a lot more than skin deep. If histamine along with other inflammatory brokers are released in to the layers simply under your skin, the swelling will be more serious and itching may very well be replaced by discomfort. This problem is called angioedema.
Angioedema could cause alarming swelling inside the mucous membrane of the lips, mouth area, gut, genitals, or even throat. The swelling falls within a day usually, but very it inhibits breathing and requires crisis treatment rarely. In the event that you experience hives which are associated with dizziness, problems inhaling and exhaling, or throat swelling, obtain immediate medical attention.

Presenter - Dr. Brad Welling

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First of all, thank you so much for coming. We come from California, Texas, Utah, New York, Georgia. I am not going to name them all. It would take too long. Thank you for the sacrifices you made to be here, to be away from your families, the financial sacrifices. We appreciate all that. But it's a special time, and it's a special place that we are all here. You don't have to worry about, "I can't hear" or "I stumble." I fell almost twice this weekend myself. But before we start, I want to thank some people for coming. Number one, Dr. Welling. I am going to say a few personal things. He is a great man! He is dedicated to the NF2. He does drug research. He wants our lives to be better. He cares about the quality of our lives. He is a patient- oriented physician.

I will tell one story that will prove this point a million times over. I had brain surgery in January. About a month later, I developed spinal fluid. Steve called Dr. Welling. To make a long story short, Dr. Welling, he was in Phoenix at the time. They actually admitted me to the hospital. And that afternoon, Dr. Welling walks in my room. He got off the airplane, came straight to Ohio State Hospital to see me. He didn't even go home. I know some of you are patients of Dr. Welling. We all have our own stories to tell about what a great physician he is, and caring wonderful man. t's a privilege and honor that he takes care of us the way he does. Thank you so much.

Next is Andrea Crago. She is from PRI, Professional Reporters, Inc. She makes this possible for us. We all would be staring at each other, making funny faces. She brings the world of speech, so we can take advantage of the great things we will "hear" this morning.

Dr. Welling, he got back at 1 a.m. this morning from Europe. He is with us here this morning. We appreciate that. I want to thank the volunteers that helped out this weekend. It's a big event. I couldn't have done this without this person taking over and that person taking over. Thank you for all your help.

Rachelle Swafford's Memorial

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Gladys Bell:

Good morning, everyone. I have never used C.A.R.T., so I am a little nervous about that. But we are here this morning for a memorial for our crew member, Rachelle Swafford. Her love of the Crew is filling this room. As well as her understanding and her appreciation of the importance of what the Crew does. The fact that we reaped strength and Encouragement. Her love is in testimony by the presence of her family here today.

You know, we have many new Crew members here. It's marvelous to see this group! We become quickly attached in this group, for those of you who are new, because when you start any relationship, you start conversation by common ground. You find what you have in common and you begin conversation, and you become truthful with one another. That deepens your relationship.

We can never say to any member of this family, Deb, Ray, Danielle, or Bryan, that we understand how they feel. No one can ever understand how one individual feels in loss. But if there is one thing that everyone in this room has in common, we understand loss. All kinds of losses. Not just life, but abilities, socialization, possessions, friends. So we in this room have a lot in common.

There's a question that's asked many times: Is your glass half empty or half full?

Facial Nerve Damage

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Based on my knowledge and experience as someone with NF2 who has dealt with facial paralysis after the facial nerve issues during brain surgery, doesn't show any signs of healing or movement till about 4 to 6 months after the damage occurs, where everyone is different it could be longer or shorter then that but a good gauge on about what to expect and the majority of the healing that will occur will be in the first year. A few things can be a factor in how much heals.

  • Physical Therapy, Exercise
  • Acupuncture
  • Food, Suppliments and Medication
  • Facial Animation Surgery

The facial nerve feeds smaller nerves and muscles that go to different parts of the face. When the nerve is damaged those smaller veins are not sent enough blood for the circulation which is necessary for muscles to move.

A good amount of facial paralysis can heal between physical therapy and acupuncture. In physical therapy they show you face exercises to regain movement again, I suggest chewing gum a lot as part of that and starting acupuncture as circulation starts back up again. Acupuncture helps to encourage blood to flow back to the different nerves in the face to encourage movement. Starting both within a few months after a nerve is damaged and for that entire first year is important in determining how much it will be able to help.

Some amount of nerve damage can heal after the first year, but the majority of the healing will happen in the first year. I believe food and medication choices could play a part in the percentage of healing as well. Antioxidants help encourage blood flow by helping to send more oxygen to veins while some medications that are meant to slow down cell growth could also be a factor against healing. So in effect, some chemotherapy options, supplements or foods even that might slow down cell growth in my opinion should be held off for as long as possible after surgery to give yourself enough time to heal, but you need to do what's right for you.

Facial animation is typically not a consideration till sometime after the nerve is damaged based on how much your nerves heal on their own. Talk to your doctors.

- Lori Davila
October 14, 2010

UdiDuo System

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Product Review - 7-12-10

I recently had an opportunity to try out the UdiDuo System, made available by the interpreter services at NYU. I highly recommend anyone with hearing issues to try out one of these devices to determine how it might be useful to you.

- Lori Davila


This neat system is a great assistance aid for one on one communications for anyone with hearing issues including :

  • individuals who are new deaf and do not know any other form of communication.
  • a hearing person needs to communicate with someone who is deaf and does not know ASL (American Sign Language), or is too difficult to speech read.
  • individuals who are learning ASL. This would work well as a good instructional tool to type a word and then sign it and have added dialogue by typing as needed.
  • if you need to have a discussion with someone who does not know ASL or someone who cannot sign very well.
  • if you need to have a conversation with someone that includes to many technical words that would require the major part of the conversation too be mostly finger spelling if ASL were used.
  • doctor's visits where a hearing impaired person needs to understand exactly what a medical professional is saying, word for word.
  • a discussion with someone with speech problems.

UdiDuo Description

Two connected computers, each facing opposite directions. As the person you are communicating with types you can read it on the screen as well as see them and in turn type back a response that will show up on their display. No internet access needed. This device would not only be good for doctor's visits but in communicating with others with hearing problems or speech problems who you might need to talk to.

ASL or lip reading alone will not help in every situation and sometimes you might need more than either in cases like a doctor's visit, or even a work environment, where you need to understand exactly what someone is saying, which is where devices like this can help.

Link -

Neurofibromatosis Type 2 (NF2)

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Neurofibromatosis Type II (NF2), is also known by the name "MISME Syndrome" (Multiple Inherited Schwannomas, Meningiomas and Ependymomas), or Bilateral Acoustic NF (BAN), is a genetic Autosomal Dominant condition. It is an Autosomal Dominant, genetic condition that affects an individual throughout the course of their life. The missing gene that results in NF2, the tumor suppressor gene, should create a protein known as MERLIN (Moesin-Ezrin-Radixin-Like Protein), also referred to as Schwannomin or Bilateral Acoustic NF (BAN). When the Merlin Protein is missing, tumor development occurs.

NF2 results in slow growing typically benign (noncancerous) tumors, primarily in the Central Nerve System; these are nerves in the brain and alone the spinal cord. These tumors result in different forms of nerve damage depending on actual location of each tumor that grows. Despite development of earlier issues that might develop, signs of hearing loss are usually the typical point of NF2 diagnosis for many individuals. Additionally, while Central Nerve System tumors can damage the different nerves for vision, NF2 commonly also results in eye issues unrelated to tumor nerve damage.

NF2 - NYU Doctors and Resources

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NYU is the only hospital in the metropolitan area offering a complete team of doctors experienced with and focused on NF2. It is one of the very few such places in the country. For that reason, our group members tend to favor NYU doctors.

However, there are some excellent doctors unaffiliated with NYU who deal with various aspects of NF2.

Dr. Roland - 2010 Wholeness of Life Award

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Dr. Roland to Receive 2010 Wholeness of Life Award at Ceremony on October 28

J. Thomas Roland Jr., MD, is this year's recipient of the Wholeness of Life Award from HealthCare Chaplaincy, a nonprofit organization that specializes in multifaith, spiritually centered healthcare. Every year, HealthCare Chaplaincy, in coordination with the Department of Pastoral Care, honors a select number of healthcare professionals in metropolitan New York who embody the chaplaincy's commitment to care for the whole person, encompassing spirit, body, and mind. The honorees have all earned a reputation among their colleagues for caring holistically for patients and co-workers by showing respect for the dignity of people, demonstrating a commitment to excellence and caring, and exhibiting compassion and understanding of the spiritual needs of individuals regardless of cultural and religious differences.

Dr. Roland, who is the Mendik Foundation Associate Professor of Otolaryngology, chair of the Department of Otolaryngology, and associate professor of neurosurgery, is a pioneer and expert in cochlear implants. In addition to serving as the co-director of our Cochlear Implant Center, he has also brought his expertise and services to those in need in Uganda-performing surgery and training others to perform various types of ear surgeries.

He was nominated for this award by several colleagues, including Maria Corbo, the former director of international and corporate services, John Golfinos, MD, chair of the Department of Neurosurgery, and Susan Waltzman, PhD, professor of otolaryngology and co-director of the Cochlear Implant Center, with support from an international patient.

What Is NF2?

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Neurofibromatosis Type II (NF2) is a genetic neurological disorder that causes benign tumors to grow within the central nervous system and the peripheral nervous system. NF2 is characterized by bilateral vestibular schwannomas (acoustic neuromas). The majority of NF2 patients (approximately 90%) develop bilateral vestibular schwannomas.

Observation (Watch and Wait)

Patients who are asymptomatic may not need treatment immediately. Patients should undergo periodic MRI scans so that doctors can monitor the growth of the tumors. Doctors will determine how often a patient will need to undergo an MRI. Doctors will advise patients as to when treatment will be necessary as well as which types of treatment would be appropriate for a particular case.

Types of tumors which commonly develop in NF-2 patients:

  • Schwannomas
  • Meningiomas
  • Ependymomas

What causes NF2?

NF2 Medical Choices

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Surgery for Tumor Removal

Three common surgical approaches are used to remove acoustic neuromas: Middle fossa approach, Retrosigmoid approach and Translabyrinthine approach. Several factors determine which approach the surgeons will use for a particular patient.

Gamma Knife Surgery

Also known as Stereotactic Radiosurgery.

Hearing Implants

CI (Cochlear Implant): In some cases, a patients auditory nerve will still be intact after an acoustic neuroma is removed and the nerve may be functioning well enough for a patient to benefit from a CI.

ABI (Auditory Brainstem Implant): The majority of NF2 patients use an ABI. In many cases during surgery to remove acoustic neuromas, the auditory nerve is severed or not functioning well enough for a patient to benefit from a cochlear implant.

Medication to Stop or Shrink Tumors

A few medications are in trials that we have hope will stop this condition. Progress is being made. Speak to your doctor.

Expanding New York State Reach

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Neurofibromatosis Northeast Adds Anne Patterson as New York State Patient and Clinic Outreach Coordinator Burlington, MA based Neurofibromatosis Northeast, the non-profit patient advocacy organization whose mission is to find a cure and treatment for neurofibromatosis (NF) by promoting scientific research, creating awareness, and providing hope and support to those who are affected by NF, is […]

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NF Northeast welcomes Paula Vrattos as new Gift Processor and Data Entry Coordinator

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Neurofibromatosis Northeast is pleased to announce that Paula Vrattos has been appointed Gift Processor and Data Entry Coordinator. Paula is charged with managing the gift entry process, preparing financial reports and supporting and assisting event fundraising. She brings to the role significant experience in both databases and non-profit fundraising. Paula comes to NF Northeast from […]

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Cure NF with RYNO

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Join NF Parents Jill and Shawn Feeney on August 24th to support RYNO and help find a cure for neurofibromatosis! To purchase tickets, please email Jill at This email address is being protected from spambots. You need JavaScript enabled to view it..

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Neurofibromatosis Type 1: A Grandmother’s View

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A beautifully written and heartwarming letter by a grandmother in our NF community. You anxiously await the birth of your grandchild with almost the same anticipation as your own child. You get that phone call or you are with them at the hospital waiting with that most wonderful feeling. Hours pass and you pace and […]

The post Neurofibromatosis Type 1: A Grandmother’s View appeared first on Neurofibromatosis Northeast.

NF Research in England offers Hope to NF2 Patients

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Scientists at the University of Plymouth reveal, for the first time, the role of the cellular prion protein in the development of neurofibromatosis 2 tumors — with potential impact on other cancers, too. Image on left is a schwannoma tumor cell. Credit: University of Plymouth New research published today, 10th July 2017, online in the […]

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SLCH Radio Rounds Podcast with Dr. David Gutmann

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This article was originally published on the SLCH Radio Rounds website in June 2017. The Neurofibromatosis Comprehensive Care Team at MORE »

The post SLCH Radio Rounds Podcast with Dr. David Gutmann appeared first on Neurofibromatosis (NF) Center.

Development of Genome-Guided Therapeutics for NF Based on Genetic Mutation Subsets

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Dr. Bruce Korf, a medical geneticist, neurologist and physician-scientist, directs the University of Alabama NF Program. With more than 25 years of experience in patient care, research and education, Dr. Korf is internationally renowned for his work on NF.                                           Written by Bruce Korf  ~ Published: June 26th, 2017 Due in part to information featured […]

The post Development of Genome-Guided Therapeutics for NF Based on Genetic Mutation Subsets appeared first on Neurofibromatosis Northeast.

NFNE Board of Directors News

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Andrés Lessing has joined the Board of Directors of Neurofibromatosis Northeast. Andrés was 9 months old when he was diagnosed with NF1. His NF was the result of a spontaneous mutation. Andrés and his family have been active within our community for many years, and one of his most critical contributions to NF Northeast was […]

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Help Spread the Word

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Join our awareness campaign and help spread the word! Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never even heard of it. Many people have trouble pronouncing the word neurofibromatosis. Neurofibromatosis Northeast has launched our #TheWordIs campaign to generate more awareness of neurofibromatosis and the many people this […]

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May Is Neurofibromatosis Awareness Month. Take The Challenge!

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Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never heard of it. Many people have trouble pronouncing neurofibromatosis. But, May is Neurofibromatosis Awareness Month! This year, we started our #TheWordIs campaign to generate more awareness of neurofibromatosis and the people this disorder affects. Our goal is to spread […]

The post May Is Neurofibromatosis Awareness Month. Take The Challenge! appeared first on Neurofibromatosis Northeast.

Camp New Friends- July 16 to 22, 2017

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Camp New Friends offers children and teens with neurofibromatosis (ages 7-17) seven days and six nights of summer fun and social connections. Camp is located in the Shenandoah Mountains of West Virginia, on the grounds of Timber Ridge Camp, 90 miles west of Washington, DC. Camp New Friends serves to reduce the stigma and isolation […]

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Patient Spotlight: Miranda Ehrstein

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Miranda Ehrstein was diagnosed with Neurofibromatosis type 1 (NF1) when she was just 18 months old. Now she is an outgoing and enthusiastic 12 year old girl, who loves stuffed animals, Science and swimming, and is determined to never let her NF1 hold her back. Read about Miranda’s journey with NF1, through the eyes of her loving family.

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NF Patient Survey

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Community Consulting Teams of Boston (CCT) is working with Neurofibromatosis Northeast (NFNE) to help understand what we are doing well and how we could improve our support and services to patients and families. CCT is a not for profit organization comprised of business school graduates who are interviewing a broad array of NFNE’s stakeholders including […]

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SLCH Radio Rounds Podcast with Dr. Stephanie Morris

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St. Louis Children’s Hospital weekly podcast, Radio Rounds, is a free series for healthcare professionals featuring Washington University pediatric specialists. MORE »

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A Message from the Executive Director

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Dear Friends, Have you ever wondered what we do and where your money goes? In this issue we hope to demonstrate the impact that NF Northeast makes on behalf of the people we serve – patients and families who live with NF. NF Northeast was founded around a kitchen table 28 years ago when NF […]

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Dr. Tina Kell – An Advocate for Federally Funded NF Research

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Please consider writing to your Senators and Representative in Congress. There are instructions in the Advocacy Toolkit, or just reach out to the NF office. We are happy to help because your voice needs to be heard! Dr. Tina Kell, a dentist living in Maine who suffers with schwannomatosis, could not join the NF Advocates […]

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