What and when ?

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Bob R

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Jun 24, 2015
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40
Reason
PALS
Diagnosis
06/2015
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US
State
FL
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Lake Worth
I'm almost two years into my nightmare, and every day I check a half dozen or so ALS websites to see what's new. And every day there is something new. Most of the new stuff falls under the heading of basic research.
I'm not expecting to read that a cure has been found. That's not realistic. But I would like to read that a drug or treatment has been or is about to be approved by the FDA. So my question is, what drug or treatment is very close and when does anyone think that might be ?
 
Hi Bob, i dont know any answers to your question, sorry.

What other als sites do u use? The more help, the better.

actually one drug i saw for SMA looks a little positive, i will find the link

thanks,

pat
 
I think, from what I've read on research sites, lots of PALS are pursuing therapies that may slow progression. There are two that come to mind: Tudca and Lunasin. Both of these "treatments" can be done outside clinical studies and the product and dosage amounts are easily Googled (you can even use the search here.) I'm planning on starting on one of these regimens as soon as I get the product.

Some people are combining these with other supplements such as B-12, tumeric, etc.

There is a lot of active discussion on ALSTDI site and there are also threads here.
 
Antisense ( gene blocking) is very exciting but it needs to be gene specific Pat The current ALS antisense trial is in SOD1 which causes one form of FALS. The fascinating thing about this, though, is there is some preclinical work that indicates lowering SOD1 levels in SALS may be beneficial so there is an arm to the current study for SALS. I have lots of hope for this trial for my SOD1 friends. I hope it helps those of you who are SALS too.

Antisense for C9 which causes more FALS than any other genetic defect and also some SALS is in development. Next year they say ( but they have said this before)
 
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One I am following as closely as possible is the copper trials in Australia ( cu- ASTM) Oregon state university have notes on the web about it, it has been amazingly successful in mice , able to stop , reverse, cure, exactly what we want in humans, full human trials starting sept- 16. The drug is already approved for use in humans for other conditions .
 
Isn't that the SOD1 inhibitor, Gary?
 
Yes, but they are of the opinion that it will work in both sporadic and familial cases . Fingers crossed
 
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