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Re: New ALS Medication

PostPosted: February 23rd, 2015, 8:30 pm
by JOHN1189KY
Please sign this petition!!!! It is very urgent and every signature counts!!! It's a petition for the U.S. FDA to accelerate the approval of Genervons ALS drug. I think this is an awesome cause! Those who suffer from that horrible disease should have the option to try that medication.

https://www.change.org/p/lisa-murkowski ... e_petition

Thanks guys,
John-

Re: New ALS Medication

PostPosted: February 23rd, 2015, 11:42 pm
by Ghayes420
I have signed the petition. I encourage others to do the same. There is not any reason to keep this drug from those who can try and use it. There should be absolutely no drug or treatment outlawed for those with ALS and other deadly diseases.

Re: New ALS Medication

PostPosted: February 24th, 2015, 3:27 am
by nickston
Another way of looking at it: the guy spent 40 years of his life looking for the holy grail and someone else may have beat him to it. I'd be "cautious" and call for bigger studies, too.

Competition, jealousy and politics play a role in the academic world, IMO...

Re: New ALS Medication

PostPosted: February 24th, 2015, 5:12 am
by TwitchyDoc
Ghayes420 wrote:He feels that there may be some preying on the desperation of others. It's very ironic that this GM604 just comes to light so shortly after Ice Bucket Challenge and the attention to ALS. He personally feels that much larger studies need to be performed before they can call this a success.


GM604 and its multi-target approach to ALS genes have been introduced in 2012 - far BEFORE the Ice Bucket Challenge. GM604 is not a new drug, it has been through a few years of research and Phase1...

Ghayes spoke to a neuromuscular specialist with 40 years of experience "who had seen this scenario before" - but I am 100% he did not read the papers as many other scientists who changed their mind when they learned that Genervon neither run the trials nor evaluated the results - these actions were conducted by US ALS centers (hospitals) run by ALS experts.

One name for all - dr. Hiroshi Mitsumoto, one the world leading ALS researchers, has been leading the Phase 1 trial. His experience not even exceeds 40 years but includes signifficant contribution to ALS state of the art...

I do agree that larger trials need to be done to see the real efficiancy but there is absolutely no reason to deny the drug to patients who are willing to try it.

Re: New ALS Medication

PostPosted: February 24th, 2015, 11:21 am
by nickston
I understand that one of the most impressive things about the drug is that improvements in physical measurements tracked closely with improvements in proposed biomarkers that can be objectively measured. That strongly suggests an actual, measureable improvement.