Research news about the cause of ALS

[dian_na]

Re: common cause of als

Allen I usually agree on most things you have ever posted but I sincerely think this is an important find. When all forms of ALS have this in common and seem to breakdown the cause of the domonoe effect we see in ALS, it makes sense.
The key is this
"We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."

if the recycling process isn't occurring we have to look at what all protein does in our bodies. We all are familar with some PALS who have said thier prgress is slowed by using amino acids.
They are saying this causes ALS, they aren't saying maybe, so if they can fix this breakdown of protein not recycling itself they've CURED ALS.
I mean we can look at Asprin and argue does it cure a headacke, no but its a definite start if your in pain

 

[Katie C]

Re: common cause of als

I never said this wasn't an important find. I never denigrated Dr Deng's research or findings for heaven's sake! My issue is with the writer of the posted article leading with a headline "Cause found for ALS"

Y'know... semantics exist as an area of study for a reason. Wording can mislead, whether intentionally or accidentally. Think about donors who are led to think "oh good, now I can send my money elsewhere, they've found the cause of ALS" And don't laugh at that.. it happens.

I never said the discovery would lead to nothing. It in fact is important. The folded protein issue has been in the research news a lot lately. The big news here is that the folded protein appears to be causing all three types. I find it intriguing that the FTD variant seems to have the same issue. But there is still much work to be done. I'm sorry if some people think I am unqualified to have that opinion. I am sorry if some people think I am trying to quash dreams. Far from it. I will continue to voice my opinion that precision and accuracy in the reporting of scientific findings are of extreme importance, especially to those most effected by that reporting.

 

[trfogey]

Re: common cause of als

"They" still have to work backwards to figure out a lot of things in medicine. Truly, there are a lot of unanswered questions.

There's one letter's difference between "hype" and "hope". And when the "why" is truly replaced by an "Oh", as in "Oh, that's how that happens", then we'll have reason for hope.

But there appears to be no credentialed researcher on this forum to rebut the words of Dr. Deng, "This study provides robust evidence showing a defect in the protein degradation pathway causes neurodegenerative disease," so I am happy to take him at his word.

By the same token, we have no qualified researcher to validate the study either. And "neurodegenerative disease" is a very broad term that is not specific to ALS.

Katie, do you have the standing to make that credentialed rebuttal?

She doesn't have to have the credentials to challenge the claim. The burden of proof lies on the person making the claim, not upon those who are skeptical.

And, frankly, that's a cheap tactic aimed at shutting people up, rather than encouraging open discussion. If the science is solid, it will stand on its own, not because of any "orthodoxy" of hope in the ALS community.

I am certain that this study will have to be replicated--that is the nature of experimental research. But if a researcher says something "causes" something based on a body of evidence, then it must be up to another researcher to say it isn't so.

I'm sure that this process is well under way with regard to these findings as we speak, and it would be prudent to reserve judgment until the review process works through the study and its results. That's how science works.

As I said before, this is an effect of some other cause. Shouting that this is the "cause" of ALS with your fingers lodged firmly in your ears doesn't make it so, regardless of how loud you are.

 

[pbush]

Re: common cause of als

Okay--I see I have struck some nerves.

Someone once told me--if it's only mindless chatter, the meaning doesn't matter.

But the research does matter--a great deal. I look forward to the day when we can look back and see these findings as the threshold for a cure.

Good luck to all of us.

V
Caregiver

 

[Shane the Pain]

Re: common cause of als

Hi Ya'll,

I'm not much of a scientist but this one web address explained it pretty well:

ubiquilin 2 « MND Research


Go Team Go,
Shane the Pain

 

[dian_na]

Re: common cause of als

This is the news release from Northwestern I thought some may not have seen it.

Major ALS Breakthrough : Northwestern University Newscenter

 

[AustinMJ]

Re: common cause of als

HOPE! This is a huge step. I pray that it brings us all a path to a cure... FAST. This should direct $ and research towards a dart board and not and ocean. The more we keep breaking down the problem, the closer we get to resolving it. Nice work researchers! Thank you!

 

[KissJ]

Hopeful! Thanks for posting. Cause/Now Cure!

 

[tdamess]

Re: common cause of als

i dont care what causes it , and i really don't care what fixes it just fix it asap

 

[jwife]

Re: common cause of als

I saw this on the internet this morning. It makes me sad that my husband didn't get to read it. His diagnosis was confirmed at Northwestern and he was part of the clinical studies there until we moved back to Alabama to be near family. He was willing to do anything that might help find a cure for this monster.

 

[AndyDJX]

Re: common cause of als

Saw this on the front page of CNN today

The fact that ALS, and specifically ALS research, is getting a lot of attention in the mainstream media seems to be a good thing. And with most things in the media, you sometimes have to cut through a lot of hype and BS to figure out what is at the core of the story.

We all know that advancements are built on top of each other. Things that seemed impossible years ago are possible today because of one small advancement that built off another, previous small advancement. Even if the rate of progress can be frustrating, progress is a positive thing nonetheless.

So even if this is a lot of hype with a little bit of hope, every bit of hope for people affected by ALS is a positive thing. This research was done in 2011; let's see where it takes the research of 2012, 2013 and onward.

 

[Shankopotomas]

This is big, big news... I'm going tomorrow for my 2 week Dex trial visit so I'll ask the docs at Columbia to break it down and tell me the real significance of it... now that they can pin point ehat's happening to us hopefully they can find a way to reverse it... wishful thinking I know, but I'll take what I can get!

 

[Ms. Pie]

Me too Shank! I'll take what I can get too!

 

[Lobster]

Re: common cause of als

Hope and fear are two sides of the same coin. I read that somewhere or maybe someone said that when I was around.

I am glad to see progress being made. I am glad to see this monstrous disease getting some attention.

I don't hate much but I hate this disease and what I have learned as a result of it.

 

[lisaohgee]

Re: common cause of als

this is a great step, but a treatment, a cure, is still years away. Hopefully this leads to it, but it may or may not.

I don't get my hopes up, because even if it does lead to something, it will be too late for my mom.