Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Here's another rant. I know rants aren't really productive, but they make me feel SOOOO much better. :)
I think it's time we hold researchers accountable and make them produce results, or tell them to take a hike.
Here's the way I look at it. It's been more than 10 years since researchers identified the NF genes and if you figure there's at least one person on each continent and in each time zone working on NF research, then that means there's someone working on NF research 24/7/365. In 10 years, that's more than 87,600 hours of research. Do they really expect us to believe that then can't come up with even a little bit of a cure or treatment in that amount of time?
If you worked at your job for 87,000 hours and didn't produce any results, do you think your company would keep you on the payroll? Hell no, you'd be gone long before you got half way there. These people are doing research with our tax dollars, and with money that is donated because of the hard work of volunteers.
I want to know what I'm getting for my money, or I want those who are wasting it to be fired. When it comes to medicine and the medical field, were still living in the Dark Ages.
I think it's time we hold researchers accountable and make them produce results, or tell them to take a hike.
Here's the way I look at it. It's been more than 10 years since researchers identified the NF genes and if you figure there's at least one person on each continent and in each time zone working on NF research, then that means there's someone working on NF research 24/7/365. In 10 years, that's more than 87,600 hours of research. Do they really expect us to believe that then can't come up with even a little bit of a cure or treatment in that amount of time?
If you worked at your job for 87,000 hours and didn't produce any results, do you think your company would keep you on the payroll? Hell no, you'd be gone long before you got half way there. These people are doing research with our tax dollars, and with money that is donated because of the hard work of volunteers.
I want to know what I'm getting for my money, or I want those who are wasting it to be fired. When it comes to medicine and the medical field, were still living in the Dark Ages.
I bet if we locked all the researchers in a room, away from their families and loved ones and only fed them when they did something that warranted being fed, they could come up with a cure in about 2 weeks.
NF research should be much more advanced than it is. If drug testing takes a long time, then you take 500 researches and they each test 1 of 500 different medicines. Then at the end of 4 years, you have 500 medicines tested instead of 1.
I think gene therapy is going to be the answer to treating and curing NF and not medicine though.
Some of the cancer drugs on the market have been in research and development for decades before they actually got on the market, I think you need to understand the research process more before you rant on NF researchers doing a bad job. You do know NF research is extremely underfunded, right?
Plus, finding the gene responsible doesn't mean anything when there are so many processes that lead to NF symptoms, most of which are not yet fully understood. If everyone with had exact symptoms with the same disease progression course it'd be much easier to find the exact process, which will lead to finding out a treatment that can stop that process along the way.
But... since NF is so variable that throws huge obsticles. 4 years is barely enough to get a theraputic compound from the bench to FDA's radar to start trials. Might be enough for existing drugs, but that doesn't mean anything.
There isn't going to be a 'cure' for NF. If treatment comes along it'll be something more likely than not that we need to adhere for life. I don't see a way to 'reverse' the mutated NF gene.
What will happen is that effective treatments will start becoming available, but there won't be a single pill that we can take and all of sudden everything goes away. Stopping progression, preventing progression and prevent severe complications will eventually happen, but a cure, treat and we are 'normal' is doubtful. For example, there could be a drug that'll reduce the tumor size but won't do a thing to the CALs since the two are likely caused by different processes.
As I said in the previous post, no one fully understands the exact process on how and why the tumors form, without understanding that, it's hard to find a way to reverse or stop it.
A post that's an opposing view or of different opinion than the OP isn't always a criticism, though it seems to be taken that way a lot. Opposing view posts add to the discussion. This post was hashing on the 'horrible jobs' the researchers are doing but they are working hard.
In the past couple of years major strides have been made, they ARE doing something. Only a couple of years back, not much was known about the process of tumor development and not there are a few that the researchers think are likely involved. There are more trials available than there ever have been, and more drugs that actually seem promising, with nearly all of them in trials being already on the market for other indications... which means faster new indication approval than a totally new drug.
Think what you guys want, but I have to give props to those who are doing NF research. With funding being so poor, they are risking a lot by doing NF research, if one year the DOD's allocation for NF research gets a drastic cut and they loose funding, that's it, they'll be out of a job, and research will come to a stop when their funding runs out. Most researchers in academic setting are in essence finding their own salary by getting the grants to do their research, parts of their salary maybe from the instutition they are with, but often, the salary the instutitution is 'paying' them is possible due to the grant the researcher was awarded. That's why there's a separate funding for young researchers, to get them while they are still in school, keep them interested and help them feel that they CAN keep on researching w/o wondering if they'll have a job due to lack of grants
I guess I can sugar coat everything so I sound nice and positive? but that's not really doing any good to anyone and facts are facts. I've seen changes in the group dynamics in the various NF online support groups over past 8 something years and frankly I'm concerned how the groups have gone from empowering, we are who we are, take it or leave it stance to more Them vs. Us. If I sound harsh it's only b/c I want to bring out more of that dynamics and stop ppl from isolating. The world isn't against us and no one is going to know about NF if all we do is sit around lamenting on how horrid NF is.
Why do you doubt wether or not I have NF?
"Gene therapy won't be it either. Neurofibromin have been found to be toxic outside of cells that require it"
Wouldn't gene therapy allow them to deliver the Neurofibromin directly to the cell?
Aren't researchers doing research with things like taking a Cancer cell, and replacing the Cancer with whatever needs to be delivered to the cell? Then instead of infecting the cells with Cancer, they're actually spreading the cure. Then once that cell is fixed, wouldn't it replicate and spread good cells?
Stuff like that works for cancer b/c the cancer isn't in every-single-cells/genes in the body. Plus the type of cancer therapy you talk about isn't really beyond experimental stages.
There is no way, as of now, to wipe out all the defective gene and replace it with a non-mutated one. this concept works for certain cancers/diseases, mostly blood related b/c chemotheraphy does have the ability to wipe out all the cells which than can be replaced.
Difference btwn NF and cancer is that in cancer, the person's genes are normal, except in the cells of the cancerous tumor.
and lana, I don't think you need to worry about computer use, but if you are really worried, you can always cut down the amount of time you spend on/near a computer, but i personally don't worry about that
Just shows that even if someone is born free from disease, they aren't always as lucky as you think.
Michael J. Fox is a good example of that. He had everything going for him; success, fame, health and then he got Parkinson's. Life can be cruel.
I do remember hearing scientist say they expected to cure Parkinson's within 10 years with gene therapy, but that was about 8 years ago.