Everyday is a step closer to a cure

OK Muffinigen, posting no text, in messages is one of the quickest way to get bounced out of here. You must be too young to get ALS because you're to young to know how the health care system works in this province. It doesn't matter if you're poor. Universal health care for everyone. Think you should be reading the news rather than ALS sites.

AL.

Sorry about this Al. Ya, I'm 23. So not too young. I do need to learn more.

anyway,

I just got this email back from Richard Garr, CEO of NeuralStem, the company that's in the process of getting their Stem Cell Research/clinical trials approved by the FDA:

"No, it's not false hope, the cells will work, and those who say they will not create a direct benefit for the patients are wrong. But it will take 18 months for us to finish the first trial including the observation period after the surgeries. And then, even if the results are fairly clear, they will certainly require a second trial before the therapy is widely available. That's the way the fda sees their job. I'm not defending them, just explaining. I hope this answers your questions, I know it doesn't answer your problems.

richard"

in case any PALS were curious about the status up to now (Feb 28th).

...

Buying more time

I don't think Neuralstem would be moving forward with their stem cell technology if they didn't think they had a very convincing case to make. There's no guarantee of efficacy, but I do think there is a very good chance their stem cells will have at least some efficacy for PALS. Although a cure may be a ways off, I think it is realistic to think new treatments such as the stem cells will be available in the next few years to slow the progression of the disease. I try to think in terms of "buying more time" in approaching the disease process and will do what I have to do if to be around for these new treatments to become available to me.

Yeah. I'm just glad that there's finally more research being done, more efforts being put into the research being done, and more results as a result of this. There could be a heck of a lot more attention to this disease though... but the momentum seems to be building. I sincerely hope 2, 3 years down the road will prove very productive for PALS in terms of better treatments as a result of Stem Cells, or any other way of coming about it.

I suspect that Neuralstem's stem cells will become available more quickly overseas, such as in Taiwan, due to less stringent government regulations. Hopefully, the FDA will put the fast track on the clinical trials here in the U.S.

http://www.ansa.it/site/notizie/awnplus/english/news/2009-03-03_103329739.html

more news. this time from the Italian researchers.
I think the subtitle "first piece of jigsaw" is referring to the fact that this gene is connected to the sporadic form of ALS.

fabulous! keep them coming.

glenn gavanaugh said:

http://www.ansa.it/site/notizie/awnplus/english/news/2009-03-03_103329739.html

more news. this time from the Italian researchers.
I think the subtitle "first piece of jigsaw" is referring to the fact that this gene is connected to the sporadic form of ALS.

Click to expand...

I wonder if this is the same news as already posted, just the italian version...I have an italian neuro in london, I will be seeing him at the end of this month, I will try to find out if this is the same or something new again.. roll on more news

i think this is different news... this gene is called "Sunc1" the other was called 'FUS/TLS' i think.. although i could be wrong.

The most recent gene discovery of sunc1, is related to the sporadic form of ALS.

http://www.thefreelibrary.com/Brain...gy+Demonstrates+Efficacy+in+an...-a0194885607

more news on Stem Cell research and how it can potentially treat neuro-degenerative diseases.

never know which articles are the cream and which are the bologne - this sounds promising anyway!

There seems to be a lot of negativity surrounding stem cells but the ones being developed now for ALS and other neurodegenerative diseases seem to be much more promising. The new stem cell technology available now from companies such as BrainStorm and Neuralstem can only be differentiated into motor neurons and glial cells (the kinds we need!) and not just any old cell.

I put much more faith in stem cells than in drug treatments which have produced virtually nothing for PALS and may not for some time to come.

I just hope that it all works out to be true, and that something is available within the next couple of years (Stem Cells).
I read a lot of comments to the effect of, "while Stem Cells probably won't be of much use in my time, I can see them being used as an effective treatment for my kids, down the road"
well, what about the 20-30 year olds who are suffering from this disease right now?
Life ain't fair, I know. But sheesh, I hope that something comes fast down the pipeline, before people who are just starting their adult lives out (or anybody of any age), get cut short - and miss out on these potential benefits.
Could be the reality, I know. But a sad reality indeed. Especially if they know that they have something here!
Rooting for Stem Cells as treatment for MND. Really, really rooting.

I hear you Glenn and second that motion! I hope these new stem cells are available in the next 2 or 3 years as well. It may be that they will be available overseas faster than they will in the United States due to less regualtion and faster clinical trial periods.

I am keeping my options open and will consider raising funds to go overseas for treatment if these new cells are proven to be safe and effective and are available far sooner than what is expected here in the states.

I'm kind of naive to all of this, but how will you know it's the same treatment (as NeuralStem etc.) overseas (as safe, tried & true)?