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.
One cannot be a carrier for NF, that's only possible for autosomal recessive genetic disorders and NF is autosomal dominant.
There is a very small chance one of you parents have germline mutation for NF but that's really rare and more likely than not one of them just has very very mild nf
Like Marah, I am also a product of genetic mutation. The one and only in my family. I never had children so it stays that way.
Hamby, I'd have to bet that one of your parents must have NF, that's wild to think that lightning struck twice for you and your sister and that you are both products of a genetic mutation for the exact same disease.
Good luck to all!
I'd like to know, hamby03 what you have to done to help create awareness, and to help raise funds for NF.
Do you have any idea what the researches are doing? Do you have any idea of the complex issues at hand? Have you ever attended a meeting with others who have NF?
I have seen some very sensible replies to your post. NF is a complex genetic disorder, involving every cell in the body. As someone pointed out a *cure* at the moment is toxic to the body.
Research money is NOT being wasted. I've met many on the team!
I also feel that if both you and your sister have NF one of your parents MUST have it. And have it mildly. Back in the 70s there was no real test for the gene. That didn't come until the 80s. No such thing as a carrier, unless you have NF!
I was born with NF, a mutation. Neither parent has it.
We all want cures, and or treatment.
Everyone talks about how there's no funding for NF, but if I remember correctly, recently read somewhere that the government had put aside $90 million dollars for NF research for 2006-2008.
I guess what upsets me the most is the lack of information. If they're doing so much research and making progress, then why isn't that information posted anywhere? I find lots of data about clinical trails, but it's so hard to find the results, and when you do find results, it always seems like it's never good news.
There should be some type of online index where all the clinical trials and results are listed.
Maybe I'll talk to my parents about having a genetic test, because if they do have a mild case, it's so mild, that they don't have any signs. No bumps, no spots, nothing
WELL, since you have no bumps, spots, etc. then you have no
idea what NF is all about or the HELL we who have it go through.
Your arrogance tends to irritate me as well. How much money
have you donated? How much volunteering have you done?
What trial programs have you participated in? What questions
have you answered from researcherse?
None I bet.
I agree with the post from Joolsruns. You just have no idea.
Where did you read that? more like third of that... over the past three years. DoD set aside 10 mil for next year. Compared to the funding some other disease get, some which are completeley preventable, it's nothing, just pennies. Supplying drugs to patients for just a couple of months can add upto tens of thousands... easily so no, there isn't money in NF research.
Research takes a long time. Just because there was a trial two years ago doesn't mean the results are ready right as soon as the trial is over nor will a trial finish in two years if a drug is supposed to be taken for that long. Not all participants will start the trial at the same time, so a 2 year long drug trial can take six year for all the participants to finish.
Please do more research if you want to rant... maybe you wouldn't be so upset if you actually understand the process better.
idea what NF is all about or the HELL we who have it go through.
Your arrogance tends to irritate me as well. How much money
have you donated? How much volunteering have you done?
What trial programs have you participated in? What questions
have you answered from researcherse?
None I bet.
I agree with the post from Joolsruns. You just have no idea."
You read wrong bumpy, he's talking about his parents