Monday, May 31, 2010
Sunday, May 30, 2010
Saturday, May 29, 2010
Friday, May 28, 2010
planted most of the flowers just now. then i had to stop and come in and take an advil. only have a few more pots to do and the white rhodie that we bought.
i have purple petunias and pink, white inpatients and pink a geranium that i haven't a clue as to the color, some little blue fizzy flowers-not sure of what they are and some red somethings!
oh, and i did buy my basil plants- HAVE to have basil! i passed by the tomato plants this year. i can not take the stress of willing the little guy to grow only to be heartbroken like last year when that tomato blight swept thru.
i have purple petunias and pink, white inpatients and pink a geranium that i haven't a clue as to the color, some little blue fizzy flowers-not sure of what they are and some red somethings!
oh, and i did buy my basil plants- HAVE to have basil! i passed by the tomato plants this year. i can not take the stress of willing the little guy to grow only to be heartbroken like last year when that tomato blight swept thru.
Thursday, May 27, 2010
sadly, the medical helicopter and all the police cars from this morning couldn't save the man that was hit by a truck while riding his bicycle to work. when they showed his photo and the black and yellow of his cycling team i realized that i had seen him many times. i feel sad for his family and friends.
I Do Not Love You Except Because I Love You
by Pablo Neruda
I do not love you except because I love you;
I go from loving to not loving you,
From waiting to not waiting for you
My heart moves from cold to fire.
I love you only because it's you the one I love;
I hate you deeply, and hating you
Bend to you, and the measure of my changing love for you
Is that I do not see you but love you blindly.
Maybe January light will consume
My heart with its cruel
Ray, stealing my key to true calm.
In this part of the story I am the one who
Dies, the only one, and I will die of love because I love you,
Because I love you, Love, in fire and blood.
by Pablo Neruda
I do not love you except because I love you;
I go from loving to not loving you,
From waiting to not waiting for you
My heart moves from cold to fire.
I love you only because it's you the one I love;
I hate you deeply, and hating you
Bend to you, and the measure of my changing love for you
Is that I do not see you but love you blindly.
Maybe January light will consume
My heart with its cruel
Ray, stealing my key to true calm.
In this part of the story I am the one who
Dies, the only one, and I will die of love because I love you,
Because I love you, Love, in fire and blood.
Wednesday, May 26, 2010
it is actually sunny and hot outside. wow, i'm amazed.
went out for luch today-very unusual and so i only had some pizza rolls and iced tea for dinner. still too full from a fine lunch. a salad of mixed greens and baby spinach with a grilled chicken breast sliced and stuff with warm feta! heaven.
not sure what i want to do til bed. i did drag out my cement tools and molds the other day and washed them and let them out to dry but i need my old work table and that's in the back of the shed yet.
there are some books that i want to get started reading but i haven't been able to relax enough to do that. i can't seem to focus for long. not even to pop in a dvd and watch a movie. that's a result of the reglan. that stuff rewired my brain along with giving me a tremor that has gotten to be barely noticeable, thankfully.
i miss being able to curl up with a book and read without having to stop and get up and walk around every chapter or so!
Tuesday, May 25, 2010
The great American book that refutes Rand Paul - Rand Paul | Kentucky Senate Republican, Ron Paul's Son - Salon.com
The great American book that refutes Rand Paul - Rand Paul | Kentucky Senate Republican, Ron Paul's Son - Salon.com
i read it in jr high. i still have a copy.
it is a small but powerful book and for those of you younger than me-i really suggest you pick up a copy.
i read it in jr high. i still have a copy.
it is a small but powerful book and for those of you younger than me-i really suggest you pick up a copy.
Monday, May 24, 2010
this is brad dowling. he has NF and this is me, i have NF.
we aren't alone. there are many many of us. more of us than those with MS and CF and MD combined. it's time to get the word OUT THERE. we aren't contagious, just as cystic fibrosis or multiple sclerosis or muscular dystrophy isn't contagious. it's a genetic screw up. the luck of the draw, life, that's all it was, life. but it's a life sentence and you can help. we need more research and we really need more understanding out there. some of us rarely venture out because of the stares of people that just aren't sure why a lot of us look as we do. some of us have learning disabilities and are labeled as slow or worse yet, lazy and stubborn. some of us are clumsy or are in pain from things going wrong inside of us. things unseen but playing havoc with different body systems. a lot of us have issues with depression, sneaky nasty chemical imbalances.
when i was a teenager, years and years BEFORE i was diagnosed i was asked to do a lady's hair. a wash and set on a woman in her early sixties. as i ran the water over her head and started to lather in the shampoo, i discovered that her scalp was simply covered with pea sized hard bumps. i didn't say anything and washed her hair then tried as best i could to set it in rollers. i wish she would have said something. i wish i would have had the courage to ask. i know now what it was. i guess she did, perhaps not. maybe she hid it just as an elderly man that lived a few blocks from me did for his whole life. i never met him. i never saw him. his only friend was the older man that lived 3 houses up from me. bud would go and bring him what he needed. bud said that his friend never left the little old wooden farmhouse that his family owned for years. he lived alone. i am not sure for how long. bud said one day that this man had lumps and bumps over his whole body and was too embarrassed or scared to go out. he died a few years before bud and the old white farm house sits empty but i think of that unseen man every time i pass by.
may is NF awareness month. may is almost over but for us and for those to come may never ends. we are ALWAYS aware of it. whether we choose to call it a disease or a condition or a fucking pain, doesn't matter really. it is what it IS. we'd like more people to know about it and understand and HELP.
oh, and as an incentive, a little something to think on- 50 percent of the time NF just pops up in a family with no history of it and this- is a neat thing to ponder- scientists think that if and WHEN the get a real handle on this it very well could lead to a CURE for cancer! makes sense when you think about it.
so, think about it. thanks.
Sunday, May 23, 2010
Saturday, May 22, 2010
Friday, May 21, 2010
from mike lucas:
Quotes of the day - "Americans... still believe in an America where anything's possible - they just don't think their leaders do." - Barack Obama - "Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek." - Barack Obama - "Believe you can and yo...u're halfway there." - Theodore Roosevelt - "Do what you can, with what you have, where you are." - Theodore Roosevelt - "Don't join the book burners. Do not think you are going to conceal thoughts by concealing evidence that they ever existed." - Dwight D. Eisenhower - "Every gun that is made, every warship launched, every rocket fired, signifies in the final sense a theft from those who hunger and are not fed, those who are cold and are not clothed." - Dwight D. Eisenhower - "Competition has been shown to be useful up to a certain point and no further, but cooperation, which is the thing we must strive for today, begins where competition leaves off."- Franklin D. Roosevelt - "In our seeking for economic and political progress, we all go up - or else we all go down."
- Franklin D. RooseveltSee More
Quotes of the day - "Americans... still believe in an America where anything's possible - they just don't think their leaders do." - Barack Obama - "Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek." - Barack Obama - "Believe you can and yo...u're halfway there." - Theodore Roosevelt - "Do what you can, with what you have, where you are." - Theodore Roosevelt - "Don't join the book burners. Do not think you are going to conceal thoughts by concealing evidence that they ever existed." - Dwight D. Eisenhower - "Every gun that is made, every warship launched, every rocket fired, signifies in the final sense a theft from those who hunger and are not fed, those who are cold and are not clothed." - Dwight D. Eisenhower - "Competition has been shown to be useful up to a certain point and no further, but cooperation, which is the thing we must strive for today, begins where competition leaves off."- Franklin D. Roosevelt - "In our seeking for economic and political progress, we all go up - or else we all go down."
- Franklin D. RooseveltSee More
You Are Glamourous and Graceful |
You have deep, sophisticated tastes. You appreciate the rich subtleties of life, and you avoid anything too crass or commercial. You believe in savoring every moment of life. You are a minimalist, and you don't like to over do things. You know that a little goes a long way. You can appreciate a piece of expensive dark chocolate, and prefer it to a fast food milkshake. You have a great personal style that others envy. You know how to spot an underrated object from miles away. |
You Have an Extremely Active Imagination |
Your mind is vivid, lively, and colorful. There is a lot going on in your head. You have the ability to make pictures and movies in your mind. You are extremely visual. Your creativity knows no bounds. You don't put restrictions or limits on your thoughts. You have a gift that other people wish they had. So exercise that imagination as much as you want! |
You Are 72% Open Minded |
You are a very open minded person, but you're also well grounded. Tolerant and flexible, you appreciate most lifestyles and viewpoints. But you also know where you stand firm, and you can draw that line. You're open to considering every possibility - but in the end, you stand true to yourself. |
Thursday, May 20, 2010
reallyREALLY??? i almost choked watching this live last night:
Visit msnbc.com for breaking news, world news, and news about the economy
Wednesday, May 19, 2010
Schiavo Family Profits From Death | worldwide hippies
Schiavo Family Profits From Death | worldwide hippies
remember this??? funny how republicans still yammer on about less government and LESS government intrusion but...
and so, her family makes money and her widower has to live with the lies told about him.
remember this??? funny how republicans still yammer on about less government and LESS government intrusion but...
and so, her family makes money and her widower has to live with the lies told about him.
the 5 falcon chicks were banded yesterday. i watched the film on the news yesterday and there were pictures in the pg this morning. i'm happy they are all healthy.
they look so tiny on the webcam but when they are held and banded you can see that they are really about the size of chickens!
i check in on them and the younger ones a few times each day. i look forward to it every spring.
they look so tiny on the webcam but when they are held and banded you can see that they are really about the size of chickens!
i check in on them and the younger ones a few times each day. i look forward to it every spring.
Tuesday, May 18, 2010
YES! the new chair and loveseat came today! the sofa i had from my mother when she passed away last september. our loveseat had really REALLY seen better days-you have no idea. even the cover i tried to disguise it with was fraying and had holes. when some family members have claws and fur and some are chubby and like to leap on things-well...
so, there was this sale and it was a good one and...
i can remember the first furniture we had. the couch was from around WWII and the coffee table had 1 leg that insisted on falling off no matter how it was fixed up.
there was a mattress and box springs bought from cashing in my small life insurance policy and a few odds and ends of furniture picked from the threat of the trash heap.
over the years i've had things come and go. this stuff is so nice and i'm very happy and very grateful.
The Colbert Report | Mon - Thurs 11:30pm / 10:30c | |||
Recap - Week of 5/10/10 | ||||
www.colbertnation.com | ||||
|
rain-PHOOEY!
voting day-thankfully that will put an end to these intolerable campaign commercials.
i am sick to DEATH of negative campaigning. i also can not stand the candidates promising things that they alone can NOT deliver. no one goes into any office and waves a magic wand and TAH DAH! i'm not THAT naive. you shouldn't be either. it's insulting at worst/misleading at best advertising!
voting day-thankfully that will put an end to these intolerable campaign commercials.
i am sick to DEATH of negative campaigning. i also can not stand the candidates promising things that they alone can NOT deliver. no one goes into any office and waves a magic wand and TAH DAH! i'm not THAT naive. you shouldn't be either. it's insulting at worst/misleading at best advertising!
Monday, May 17, 2010
What are the neurofibromatoses?
The neurofibromatoses are a group of three genetically distinct disorders that cause tumors to grow in the nervous system. Tumors begin in the supporting cells that make up the nerve and the myelin sheath (the thin membrane that envelops and protects the nerves), rather than the cells that actually transmit information. The type of tumor that develops depends on the type of supporting cells involved.
Scientists have classified the disorders as neurofibromatosis type 1 (NF1, also called von Recklinghaus disease), neurofibromatosis type 2 (NF2), and a type that was once considered to be a variation of NF2 but is now called schwannomatosis. An estimated 100,000 Americans have a neurofibromatosis disorder, which occurs in both sexes and in all races and ethnic groups.
The most common nerve-associated tumors in NF1 are neurofibromas (tumors of the peripheral nerves), whereas schwannomas (tumors that begin in Schwann cells that help form the myelin sheath) are most common in NF2 and schwannomatosis. Most tumors are benign, although occasionally they may become cancerous.
Why these tumors occur still isn’t completely known, but it appears to be related mainly to mutations in genes that play key roles in suppressing cell growth in the nervous system. These mutations keep the genes—identified as NF1, NF2 and SMARCB1/INI1—from making normal proteins that control cell production. Without the normal function of these proteins, cells multiply out of control and form tumors.
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What is NF1?
NF1 is the most common neurofibromatosis, occurring in 1 in 3,000 to 4,000 individuals in the United States. Although many affected people inherit the disorder, between 30 and 50 percent of new cases result from a spontaneous genetic mutation of unknown cause. Once this mutation has taken place, the mutant gene can be passed to succeeding generations.
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What are the signs and symptoms of NF1?
To diagnose NF1, a doctor looks for two or more of the following:
six or more light brown spots on the skin (often called “café-au-lait” spots), measuring more than 5 millimeters in diameter in children or more than 15 millimeters across in adolescents and adults;
two or more neurofibromas, or one plexiform neurofibroma (a neurofibroma that involves many nerves);
freckling in the area of the armpit or the groin;
two or more growths on the iris of the eye (known as Lisch nodules or iris hamartomas);
a tumor on the optic nerve (called an optic nerve glioma)
abnormal development of the spine (scoliosis), the temple (sphenoid) bone of the skull, or the tibia (one of the long bones of the shin);
a parent, sibling, or child with NF1.
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What other symptoms or conditions are associated with NF1?
Many children with NF1 have larger than normal head circumference and are shorter than average. Hydrocephalus, the abnormal buildup of fluid in the brain, is a possible complication of the disorder. Headache and epilepsy are also more likely in individuals with NF1 than in the healthy population. Cardiovascular complications associated with NF1 include congenital heart defects, high blood pressure (hypertension), and constricted, blocked, or damaged blood vessels (vasculopathy). Children with NF1 may have poor language and visual-spatial skills, and perform less well on academic achievement tests, including those that measure reading, spelling, and math skills. Learning disabilities, such as attention deficit hyperactivity disorder (ADHD), are common in children with NF1. An estimated 3 to 5 percent of tumors may become cancerous, requiring aggressive treatment. These tumors are called malignant peripheral nerve sheath tumors.
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When do symptoms appear?
Symptoms, particularly the most common skin abnormalities-café-au-lait spots, neurofibromas, Lisch nodules, and freckling in the armpit and groin-are often evident at birth or shortly afterwards, and almost always by the time a child is 10 years old. Because many features of these disorders are age dependent, a definitive diagnosis may take several years.
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What is the prognosis for someone with NF1?
NF1 is a progressive disorder, which means most symptoms will worsen over time, although a small number of people may have symptoms that remain constant. It isn’t possible to predict the course of an individual’s disorder. In general, most people with NF1 will develop mild to moderate symptoms. Most people with NF1 have a normal life expectancy. Neurofibromas on or under the skin can increase with age and cause cosmetic and psychological issues.
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How is NF1 treated?
Scientists don’t know how to prevent neurofibromas from growing. Surgery is often recommended to remove tumors that become symptomatic and may become cancerous, as well as for tumors that cause significant cosmetic disfigurement. Several surgical options exist, but there is no general agreement among doctors about when surgery should be performed or which surgical option is best. Individuals considering surgery should carefully weigh the risks and benefits of all their options to determine which treatment is right for them. Treatment for neurofibromas that become malignant may include surgery, radiation, or chemotherapy. Surgery, radiation and/or chemotherapy may also be used to control or reduce the size of optic nerve gliomas when vision is threatened. Some bone malformations, such as scoliosis, can be corrected surgically.
Treatments for other conditions associated with NF1 are aimed at controlling or relieving symptoms. Headache and seizures are treated with medications. Since children with NF1 have a higher than average risk for learning disabilities, they should undergo a detailed neurological exam before they enter school. Once these children are in school, teachers or parents who suspect there is evidence of one or more learning disabilities should request an evaluation that includes an IQ test and the standard range of tests to evaluate verbal and spatial skills.
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What is NF2?
This rare disorder affects about 1 in 25,000 people. Approximately 50 percent of affected people inherit the disorder; in others the disorder is caused by a spontaneous genetic mutation of unknown cause. The hallmark finding in NF2 is the presence of slow-growing tumors on the eighth cranial nerves. These nerves have two branches: the acoustic branch helps people hear by transmitting sound sensations to the brain; and the vestibular branch helps people maintain their balance. The characteristic tumors of NF2 are called vestibular schwannomas because of their location and the types of cells involved. As these tumors grow, they may press against and damage nearby structures such as other cranial nerves and the brain stem, the latter which can cause serious disability. Schwannomas in NF2 may occur along any nerve in the body, including the spinal nerves, other cranial nerves, and peripheral nerves in the body. These tumors may be seen as bumps under the skin (when the nerves involved are just under the skin surface) or can also be seen on the skin surface as small (less than 1 inch), dark, rough areas of hairy skin. In children, tumors may be smoother, less pigmented, and less hairy.
Although individuals with NF2 may have schwannomas that resemble small, flesh-colored skin flaps, they rarely have the café-au-lait spots that are seen in NF1.
Individuals with NF2 are at risk for developing other types of nervous system tumors, such as ependymomas and gliomas (two tumor types that grow in the spinal cord) and meningiomas (tumors that grow along the protective layers surrounding the brain and spinal cord). Affected individuals may develop cataracts at an earlier age or changes in the retina that may affect vision. Individuals with NF2 may also develop problems with nerve function independent of tumors, usually symmetric numbness and weakness in the extremities, due to the development of a peripheral neuropathy.
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What are the signs and symptoms of NF2?
To diagnose NF2, a doctor looks for the following:
bilateral vestibular schwannomas; or
a family history of NF2 (parent, sibling, or child) plus a unilateral vestibular schwannoma before age 30; or
any two of the following:
o glioma;
o meningioma,
o schwannoma; or
o juvenile posterior subcapsular/lenticular opacity (cataract) or juvenile cortical cataract.
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When do symptoms appear?
Signs of NF2 may be present in childhood but are so subtle that they can be overlooked, especially in children who don't have a family history of the disorder. Typically, symptoms of NF2 are noticed between 18 and 22 years of age. The most frequent first symptom is hearing loss or ringing in the ears (tinnitus). Less often, the first visit to a doctor will be because of disturbances in balance, visual impairment (such as vision loss from cataracts), weakness in an arm or leg, seizures, or skin tumors.
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What is the prognosis for someone with NF2?
Because NF2 is so rare, few studies have been done to look at the natural progression of the disorder. The course of NF2 varies greatly among individuals, although inherited NF2 appears to run a similar course among affected family members. Generally, vestibular schwannomas grow slowly, and balance and hearing deteriorate over a period of years. A recent study suggests that an earlier age of onset and the presence of meningiomas are associated with greater mortality risk.
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How is NF2 treated?
NF2 is best managed at a specialty clinic with an initial screening and annual follow-up evaluations (more frequent if the disease is severe). Improved diagnostic technologies, such as magnetic resonance imaging (MRI), can reveal tumors of the vestibular nerve as small as a few millimeters in diameter. Vestibular schwannomas grow slowly, but they can grow large enough to engulf one of the eighth cranial nerves and cause brain stem compression and damage to surrounding cranial nerves. Surgical options depend on tumor size and the extent of hearing loss. There is no general agreement among doctors about when surgery should be performed or which surgical option is best. Individuals considering surgery should carefully weigh the risks and benefits of all options to determine which treatment is right for them. Surgery to remove the entire tumor while it’s still small might help preserve hearing. If hearing is lost during this surgery, but the auditory nerve is maintained, the surgical placement of a cochlear implant (a device placed in the inner ear, or cochlea, that processes electronic signals from sound waves to the auditory nerve) may be an option to improve hearing. As tumors grow larger, it becomes harder to surgically preserve hearing and the auditory nerve. The development of the penetrating auditory brain stem implant (a device that stimulates the hearing portions of the brain) can restore some hearing in individuals who have completely lost hearing and do not have an auditory nerve present. Surgery for other tumors associated with NF2 is aimed at controlling or relieving symptoms. Surgery also can correct cataracts and retinal abnormalities.
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What is schwannomatosis?
Schwannomatosis is a rare form of neurofibromatosis that is genetically and clinically distinct from NF1 and NF2. Inherited forms of the disorder account for only 15 percent of all cases. Researchers have identified a mutation of the SMARCB1/INI1 gene that is associated with the familial form of the disease but don’t fully understand what causes the intense pain that characterizes this disorder.
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What are the signs and symptoms of schwannomatosis?
The distinguishing feature of schwannomatosis is the development of multiple schwannomas everywhere in the body except on the vestibular nerve. The dominant symptom is pain, which develops as a schwannoma enlarges, compresses nerves, or presses on adjacent tissue. Some people experience additional neurological symptoms, such as numbness, tingling, or weakness in the fingers and toes. Individuals with schwannomatosis do not have neurofibromas.
About one-third of individuals with schwannomatosis have tumors limited to a single part of the body, such as an arm, leg, or a segment of the spine. Some people develop many schwannomas, while others develop only a few.
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What is the prognosis for someone with schwannomatosis?
Anyone with schwannomatosis experiences some degree of pain, but the intensity varies. A small number of people have such mild pain that they are never diagnosed with the disorder. Most people have significant pain, which can be managed with medications or surgery. In some extreme cases, pain will be so severe and disabling it will keep people from working or leaving the house.
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How is schwannomatosis treated?
There is no currently accepted medical treatment or drug for schwannomatosis, but surgical management is often effective. Pain usually subsides when tumors are removed completely, although it may recur should new tumors form. When surgery isn’t possible, ongoing monitoring and management of pain in a multidisciplinary pain clinic is advisable.
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Are there prenatal tests for the neurofibromatoses?
Clinical genetic testing can confirm the presence of a mutation in the NF1 gene. Prenatal testing for the NF1 mutation is also possible using amniocentesis or chorionic villus sampling procedures. Genetic testing for the NF2 mutation is sometimes available, but is accurate only in about 65 percent of those individuals tested. Prenatal or genetic testing for schwannomotosis currently does not exist.
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What research is being done on the neurofibromatoses?
The National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), is the primary federal supporter of research on neurological diseases. The Institute sponsors basic studies aimed at understanding normal and abnormal development of the brain and nervous system, as well as clinical trials to improve the diagnosis and treatment of neurological disorders. In conjunction with the other NIH institutes, the NINDS supports research focused on finding better ways to prevent, treat, and ultimately cure the neurofibromatoses.
In the mid-1990s, research supported by the NINDS located the exact position of the NF1 gene on chromosome 17. The gene has been cloned and its structure continues to be analyzed. The NF1 gene makes a large and complex protein called neurofibromin, which is primarily active in nervous system cells as a regulator of cell division and functions as a kind of molecular brake to keep cells from over-multiplying. In addition to work on NF1, intensive efforts have led to the identification of the NF2 gene on chromosome 22. As in NF1, the NF2 gene product is a tumor-suppressor protein (called merlin or schwannomin).
Ongoing NINDS-sponsored research continues to discover additional genes that appear to play a role in NF-related tumor suppression or growth. Continuing research on these genes and their proteins is beginning to reveal how this novel family of growth regulators controls tumors formation and growth. Understanding the molecular pathways and mechanisms that govern these key proteins and their activities will offer scientists exciting opportunities to design drugs that could replace the missing proteins in people who have the neurofibromatoses, and return their cell production to normal.
Current basic and clinical research is aimed at understanding how the genetic mutations that cause the benign tumors of NF1 also cause neurons and neural networks to form abnormally during fetal development, which later result in the learning disabilities and cognitive deficits of children with the disorder. The NINDS also encourages research to develop improved methods to diagnose the neurofibromatoses and identify factors that contribute to the wide variations of symptoms and severity of the disorders.
The NINDS is supporting ongoing research with a large group of children with NF1 to find associations between brain abnormalities and specific cognitive disabilities. Finding these links would give doctors an indication of the kinds of learning disabilities parents and their children could anticipate and help them develop early intervention programs.
The NINDS supports clinical research aimed at understanding the natural history of tumors in NF2 and determining possible factors that may regulate their growth patterns. Using diagnostic imaging, eye examinations, hearing and balance tests, neurologic examinations, blood and genetic testing, and quality of life assessements, researchers hope to better characterize the impact of NF2 on individuals and look for possible factors that may affect disease progression.
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