I also think the aids movement learned quickly how to join together even with the other people in their movement they may not have liked, back then it was known as the gay disease and many of these activists were coming out of the closet for the first time. So they had a strong common bond. They were angry. They fought for treatments. What I've seen with spinal cord injury is totally opposite. They were taught to be appreciative and accept the trickle down theory that if we raise enough money for the research just maybe we will get something back.
The AIDS people knew they were going to die soon, they didn't have anything to loose, they didn't have the optiong to get use to AIDS and live life "to the fullest" as most people with SCI do.
They got to increase NIH founding for AIDS research from $5.6 million in fiscal year 1982 to &1.61 billion in fiscal year 1998. Currently the NIH spends just $78 millions on SCI.. and I don't know how exactly they spend these money. AIDS people were not afraid to get arrested. In the mid -1980s, ATZ was shown to slow the progression from HIV to AIDS. The drug was approved by the FDA in march of 1987, just 25 months after the first signals that it was active against HIV in the laboratory. This is one of the shortest periods of drug discovery to approval ever.
In SCI research we have the case of the enzime "chondrointinase" that was discovered more than 20 years ago and we still don't know if & when it will be tested on people. Existing SCI orgs have not been able to take any advocacy action to speed things up. I have to suspect the company that owns the patent of chondroitinase (Acorda) has sponsored "key players" to keep people calm.
I don't think people on this forum have really bought into any hype or promises. I think we are looking for information and web sites that can give us information on the latest and most promising science.
tbone I am not saying that about the people on this forum. And it is nice to see people wanting to share their experience and knowledge here on this forum. But, it's not so uncommon for un informed well meaning outsiders to tell me there are cures now for my son because they heard about it on the news.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
So have you ever considered starting your own organization that'll be different to the rest?
I don't think we are ready for that yet, I think too many still believe the promises and hype. Although parents are good advocates I would rather be in a support type position to someone with SCI. It works better that way. Most often people come to forums and after a few years move on. Through education maybe we can hold on to some of those interested in activism.
I agree that we are not ready. To start a new org at the moment would be a very likely failure if the goal is to make a cure happen sooner. I don't know if there will ever be the conditions to start a really effective SCI org as it was ACT UP for AIDS people en.wikipedia.org/wiki/ACT_UP
In SCI research we have the case of the enzime "chondrointinase" that was discovered more than 20 years ago and we still don't know if & when it will be tested on people. Existing SCI orgs have not been able to take any advocacy action to speed things up.
Paolo, I'm sorry you must have missed the announcements being made by the Spinal Research Foundation in the UK.
Dr. Mark Bacon is the Director of Research at the United Kingdom organization of Spinal Research. He gave a presentation and updated everyone on their work with translating Chondroitinase to human trials in Boston Massachusetts just a few months ago in late September. His presentation can be found in the U2FP library of 2013 videos. Dr. Bacon did a wonderful job explaining what is happening with getting the enzyme changed to a human clinical grade formulation and their necessary steps taking it towards a human trial. The library can be found here if you're interested in watching what he says Spinal Research is working on and their timelines they've put together with a pharmaceutical company.
In SCI research we have the case of the enzime "chondrointinase" that was discovered more than 20 years ago and we still don't know if & when it will be tested on people. Existing SCI orgs have not been able to take any advocacy action to speed things up.
Paolo, I'm sorry you must have missed the announcements being made by the Spinal Research Foundation in the UK.
Dr. Mark Bacon is the Director of Research at the United Kingdom organization of Spinal Research. He gave a presentation and updated everyone on their work with translating Chondroitinase to human trials in Boston Massachusetts just a few months ago in late September. His presentation can be found in the U2FP library of 2013 videos. Dr. Bacon did a wonderful job explaining what is happening with getting the enzyme changed to a human clinical grade formulation and their necessary steps taking it towards a human trial. The library can be found here if you're interested in watching what he says Spinal Research is working on and their timelines they've put together with a pharmaceutical company.
Thanks Grammy,
I know about that.
Can you point me to any advocacy action that has resulted in accelarating the process? As I know Dr. Bacon has decided to do that together with other scientists and has convinced Spinal Research to spend money for that goal, but I am not aware of any action taken by people with SCI that has resulted in accelerating the process to take Ch'ase to human trials. If I remember correctly Dr. Jerry Silver suggested people with SCI to take asction to convince Acorda to invest in Ch'ase to get it to trial ASAP, but I am not aware of any action taken. Unfortunatly I have reasons to suspect that Acorda has sponsored SCI orgs to prevent them from taking actions that might have affected Acorda share price by forcing them to invest in Ch'ase.
I see what Paolo is saying. Acorda sponsors U2F so I guess they wouldn't want to bite the hand that feeds them.
I posted this earlier
No, we aren't doing anything wrong. Fighting harder would be a good thing, but we don't have any type of organization to rally behind. Most if not all of the spinal cord injury orgs become a part of the established research/medical community. They may have started out on the right path, but in time they start to enjoy the gala meetings and notoriety and enjoy breaking bread with some of the rock star scientists. The life of their organization becomes of utmost importance overshadowing their original goals.
Paolo, I don't know anything about the Acorda biotech company share prices nor does that conspiracy theory hold water. The last I saw on the internet, that company was looking for buyers to purchase their research investment since they only took it to a pre-clinical stage. It's probably still up for sale if you look around on the web deep enough. It's probably still listed as a nonperforming asset on their books since it hasn't moved through any pipeline towards development. The Acorda company never did get a human clinical grade version developed as far as I know.
Silver is on the translational team at Spinal Research but according to what I understood Dr. Bacon to report was that they now have a large biotech company right there in the UK to develop the human clinical grade version for their trial. I don't think you listened to his presentation to the very end where he explained everything. I didn't get the impression they were ready yet to call in other foundations to help with funding but he did talk about that in his future planning but he didn't have prices laid out yet in his plan.
Maybe because Acorda sponsors U2F grammy removed some comments from her blog that showed ampyra couldn't beat the placebo in this topic
Ampyra clinical trial for spinal cord injury starts at Kessler Posted on June 16, 2012 by christalpowell
With little fanfare to any public announcement, Acorda is again attempting another clinical trial for a spinal cord injury indication for payor coverage.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
I posted this 4 days after the trial was announced on the government trial website at clinicatrial.gov . I don't endorse any clinical trial that I happen to report on the blog nor do I solicit comments and suggest stock purchases of any biotech companies. (As everyone can see, the trial has not been completed nor data released yet. It still shows they are recruiting patients for it).
There was another article that appeared a couple months later in the summer of 2012 on my blog.
The removed post was way before the trial even started. And it was about a previous trial and why we are wasting more funds on doing another trial. This Kessler trial is being funded by the dept of education. I think they have better places to spend the money, sounds politically connected.
BTW, the argument for funding this trial with dept of ed money is to help people with disabilities get an education. Assuming Ampyra works it can increase the walking speed by a half second in a 25 foot walk which means they would walk 44.5 seconds instead of 45 seconds to do a 25 foot walk, how is that going to help someones education. If all this funding goes to crap science there will never be a cure
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
This Kessler trial is being funded by the dept of education. I think they have better places to spend the money, sounds politically connected.
Do you mean the rehabilitation center would be getting illegal kickbacks from the dept of education? Or do you mean political party voting like the president Obama healthcare act or the FDA type of stuff?
Unfortunatly I have reasons to suspect that Acorda has sponsored SCI orgs to prevent them from taking actions that might have affected Acorda share price by forcing them to invest in Ch'ase.
Maybe because Acorda sponsors U2F grammy removed some comments from her blog that showed ampyra couldn't beat the placebo in this topic
I find it amazing that by using words like "I have reason to suspect," and, "maybe," that conspiracy theories are allowed to flood the board. I don't understand how this helps the SCI community in anyway.
My feeling about statements like these is that they should be backed up with facts. So unless you guys got proof, please stop making accusations using weak words like "maybe" and "reason to suspect".
I actually appeal to the moderators. These are not opinion statements that are being made, eg. "I think we should make an AIDS style movement." OR "Current SCI organisations have not done enough to push for cure." The above statements made by Paolo and Bob are accusations which cast aspersions, and in Bob's statement very clearly against U2FP. How can any organisation defend itself against these kind of statements in which the person who made it can hide behind words like MAYBE.
It's time to get off the pot here (and I don't mean the Colorado kind).
Dennis Tesolat
www.StemCellsandAtomBombs.org ______________
"Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
Martin Luther King
It is true that Acorda Sponsors U2F end of argument
Bob, Unfortunately this is not what your sentence said. You didn't say, "Acorda sponsors U2F."
You said, "Maybe because Acorda sponsors U2F grammy removed some comments from her blog that showed ampyra couldn't beat the placebo in this topic ."
Acorda sponsoring U2F is true. But I don't know that Grammy took down some comments from her blog because Acorda sponsors U2F. You see the difference in my two sentences, don't you? Is the second statement true, or isn't it? Or may it is or maybe it isn't? Which?
Don't make statements that you can't back up with facts especially when those statements make it look like people are getting bought off. The reason I'm telling you this is because these statements hurt the quest for a cure as it casts unsupported doubts on organisations that are involved in curing SCI.
Got something to say, say it and back it up with facts.
Dennis Tesolat
www.StemCellsandAtomBombs.org ______________
"Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
Martin Luther King