I went to a conference at "Push to Walk" in riverdale, NJ a place I work out in. It was held by Accorda, talked to a few patients there who had MS, listened to their stories about using Ampyra. I asked the Doc who was speaking if there was any information on its efficacy for TM they had no information for me. The patients with MS had some good results mostly with stamina and endurance while doing exercise. Nothing earth shattering. Emailed the company to see if they had done, are doing, or planned on doing any trials with TM never got a reply. Never followed up with them after that.
tbone57,
Wow, "Push to Walk" is one of our sponsors! Here's your information on the TM trial posted about a month ago by Dr. Michael Levy from John Hopkins and the link at clinical trial. gov. you were looking for. He's explaining all of the statistics and benefits seen in the Multiple Sclerosis trials where they tested this dalfampridine drug called Amprya. He also explains the redesign of this new TM trial that he's referenced in the patient recruiting information if you're interested. Perhaps they were in the middle of the trial redesign when you tried to contact them and that's why you didn't get an answer. I also need to make my disclaimer perfectly clear. I did not check to see if the physician on this video gave proper FDA information, nor am I selling a pharmaceutical or clinical trial to you. I'm not your doctor. You're strictly on your own with Dr. Levy. I'm only sharing this information with you as cookie baker from the internet since I'm not a spokesman for anything or anybody but myself. Hope this helps on the information you were searching for. Good luck!
I went to a conference at "Push to Walk" in riverdale, NJ a place I work out in.
Even though "Push to Walk" is another one of our sponsors, I've never been in their facility. I watched the video here and this is a great place. Have you been going there long?
Dennis, I wasn't so thrilled with the answers I got involving Acorda. It does have the feel there was a deliberate effort to minimize the warnings from the FDA. I don't know if it's possible, but funding from McDonalds, Nike, Sara Lee etc. would be more appropriate. It also would get the word out to the general public instead of within the research/pharmaceutical landscape.
I don't think that way when people point out a problem. I feel good they have identified something that needs to be corrected. I also feel our leaders should be happy and interested to hear what's on the minds of people in the community.
Come on Bob, you can do better than the second paragraph of your non-response. I'll ask again; if U2FP is not able to "challenge" Acorda because of Acorda's financial support, then what do you propose. You've been on these forums for a long time and with all the info you have you are definitely not a novice. So, concretely what do you propose? Not a politician's answer like the one I quoted above, but a real,concrete, let's get the community motivated type answer. I want to know what you plan to do as a a cure activist. If U2FP advocacy has been corruped, we need others to pave the way. Back to you!
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
Dennis, I wasn't so thrilled with the answers I got involving Acorda. It does have the feel there was a deliberate effort to minimize the warnings from the FDA. I don't know if it's possible, but funding from McDonalds, Nike, Sara Lee etc. would be more appropriate. It also would get the word out to the general public instead of within the research/pharmaceutical landscape.
I don't think that way when people point out a problem. I feel good they have identified something that needs to be corrected. I also feel our leaders should be happy and interested to hear what's on the minds of people in the community.
Come on Bob, you can do better than the second paragraph of your non-response. I'll ask again; if U2FP is not able to "challenge" Acorda because of Acorda's financial support, then what do you propose. You've been on these forums for a long time and with all the info you have you are definitely not a novice. So, concretely what do you propose? Not a politician's answer like the one I quoted above, but a real,concrete, let's get the community motivated type answer. I want to know what you plan to do as a a cure activist. If U2FP advocacy has been corruped, we need others to pave the way. Back to you!
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
Funding for U2FP? So you propose that you will go get this funding or that others should now go get the funding after you thought of the answer? Bob, I'm asking about what YOU are going to do, not what you think ought to be done. You're rapidly losing credibility. I'm really interested in your action plan.
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
I went to a conference at "Push to Walk" in riverdale, NJ a place I work out in. It was held by Accorda, talked to a few patients there who had MS, listened to their stories about using Ampyra. I asked the Doc who was speaking if there was any information on its efficacy for TM they had no information for me. The patients with MS had some good results mostly with stamina and endurance while doing exercise. Nothing earth shattering. Emailed the company to see if they had done, are doing, or planned on doing any trials with TM never got a reply. Never followed up with them after that.
Aug 13 (Reuters) - Acorda Therapeutics Inc said on Monday that a low-dose version of its multiple sclerosis drug Ampyra did not work in a clinical study, a potentially positive result that will hold generic competition at bay until 2027.
A post-marketing study of Ampyra failed to show an improvement in patients' walking speed when 5 mg of the drug was given twice a day. Had the 5 mg version worked, generic rivals could have entered the market in 2017 or 2018.
A 10 mg version of the drug was approved by the U.S. Food and Drug Administration in 2010, and that dose has patent protection until 2027. The agency had asked the company to conduct a study of a 5 mg dose.
On a less positive note, the latest trial showed that the approved 10 mg dose also failed to improve walking speeds when compared with a placebo.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
And here is a warning letter to Ron Cohen of Acorda from the FDA We must educate each other, and refuse sponsorship from companies like acorda
Here's an education of facts that make your proposed conspiracy theories of corruption total nonsense and without merit.
The dalfampridine drug called Ampyra was developed by this biotech company called Acorda. It's a Multiple Sclerosis drug approved by the FDA. It is still being tested in clinical trials on paralysis at this point in time. It's being tested in many labs as reported here and explained on video at a Motion Lab. There is no published data available yet on the results of this ongoing dalfampridine trial that is currently recruiting patients and is listed HERE. There are 23 open clinical trials for various health indications such as optic neuropathy, optic neuritis, Parkinson's disease, Cerebral palsy, Renal Impairments, Spinal Muscular Atrophy, Spinocerebellar Ataxias, Ischemic Stroke and probably other patient groups with this dalfampridine drug.
Dr. Wise Young was one of the original founders of the company in 1995 but is no longer with the company, however Ron Cohen is the CEO.Acorda markets both Zanaflex and Qutenza. They continue working at bringing many other drugs in their pipeline for various neurological diseases to market. The SCI research and development pipeline is listed here. AC105, rHlgM22 , Chondroitinase, and GGF2. (None of these are yet FDA approved for SCI including dalfampridine).
Here's a list of the u2fp supporters that are both corporate and individual supporters who through their generous contributions make it possible for U2FP to lead the worldwide effort to find cures for paralysis. Here's the u2fp mission and a list of partners that work for cure. These are the primary things u2fp is involved in with, both research and the annual Working 2 Walk Symposium.u2fp doesn't lobby drugs and trials.This is the U2FP website.
Grammy,
thanks for the clarifications, so now I understand better why U2FP never took action to put pressure on Acorda to get Chondroitinase to clinical trials as was suggested by Dr. Jerry Silver.
So, in your opinion, which SCI org should have done that?
thanks for the clarifications, so now I understand better why U2FP never took action to put pressure on Acorda to get Chondroitinase to clinical trials as was suggested by Dr. Jerry Silver.
So, in your opinion, which SCI org should have done that?
Paolo
Paolo, You're too funny, but this is boring. By asking me such a question you obviously don't listen or instead you have choosen not to. Which is it?
Chondroitinase ABC (Ch'ase) needs to be taken out of it's current bacterial form. Scientists need to be able to change the molecular properties of it. Acorda was invited to speak about it at W2W. I posted that video here for Bob. There is no drug made yet. They're still researching how to make a human CSPG inhibitor. Many labs around the world are working on this same issue. Acorda has not yet accomplished a complete human formulation version in their development labs yet that been reported that I'm aware of.
There is no drug. Only research.
The Spinal Research of UK was invited to W2W to speak also a couple months ago. I posted that link for you. They've been funding this line of research for many years and Dr. Bacon said they are now ready to start transitioning all of their years research towards human trials and have started setting up teams. Please see that symposium video to hear his report. Dr. Silver is working with this team. Novartis has not yet accomplished a complete human formulation version in their development labs yet that been reported that I'm aware of either.
There is no drug. Only research.
Yet again, there is no human drug developed and there is no trial in existence. It's a moot point. I've given the community the same information links and provided every link of the video presentations repeatedly. I do remember writing in my latest research report that Sigma made a nice clean research reagent for scientists to use. You could take some action yourself by contacting them to see if they could possibly make a human grade formula. In the meantime, have you bothered to call Spinal Research, Acorda or Novartis yourself for their updated reports to see how they are coming along in developing a human product for CSPG inhibition in their labs or is it that you are proposing someone else should do that for you?
Here's an education of facts that make your proposed conspiracy theories of corruption total nonsense and without merit.
The dalfampridine drug called Ampyra was developed by this biotech company called Acorda. It's a Multiple Sclerosis drug approved by the FDA. It is still being tested in clinical trials on paralysis at this point in time. It's being tested in many labs as reported here and explained on video at a Motion Lab. There is no published data available yet on the results of this ongoing dalfampridine trial that is currently recruiting patients and is listed HERE. There are 23 open clinical trials for various health indications such as optic neuropathy, optic neuritis, Parkinson's disease, Cerebral palsy, Renal Impairments, Spinal Muscular Atrophy, Spinocerebellar Ataxias, Ischemic Stroke and probably other patient groups with this dalfampridine drug.
Dr. Wise Young was one of the original founders of the company in 1995 but is no longer with the company, however Ron Cohen is the CEO.Acorda markets both Zanaflex and Qutenza. They continue working at bringing many other drugs in their pipeline for various neurological diseases to market. The SCI research and development pipeline is listed here. AC105, rHlgM22 , Chondroitinase, and GGF2. (None of these are yet FDA approved for SCI including dalfampridine).
Here's a list of the u2fp supporters that are both corporate and individual supporters who through their generous contributions make it possible for U2FP to lead the worldwide effort to find cures for paralysis. Here's the u2fp mission and a list of partners that work for cure. These are the primary things u2fp is involved in with, both research and the annual Working 2 Walk Symposium.u2fp doesn't lobby drugs and trials.This is the U2FP website.
Grammy,
thanks for the clarifications, so now I understand better why U2FP never took action to put pressure on Acorda to get Chondroitinase to clinical trials as was suggested by Dr. Jerry Silver.
So, in your opinion, which SCI org should have done that?
Paolo
I don't understand (u2fp doesn't lobby drugs and trials) because right on the U2F website I saw this:
» Assessing the landscape. Where does curing paralysis stand in the broader field of medical research and translation? When we identify good science, how do we attract investors and bring it to clinical trial? How can we make our cause a priority amongst such worthy competition? The answers to these questions change with the financial and political winds.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
Actually Bob, the landscape has just been assessed already Yet again, there isn't a human grade formulation made of a CSPG inhibitor developed yet and there is no trial yet. I do hope I can report such a drug invention has been accomplished and that there will be a trial in the future. As Dr. Bacon so eloquently stated in his video, "he's hoping for favorable winds". Why are you ignoring Dennis?
Grammy, that's not how I interpret the comment the CEO of U2F made. Her comment had action in it. It was what we should do when we identify good science to help it get to clinical trial. So, is U2F pressing Acorda to prioritize human grade Chondroitinase or as asked by Paolo what group should push Acorda?
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
Grammy, that's not how I interpret the comment the CEO of U2F made. Her comment had action in it. It was what we should do when we identify good science to help it get to clinical trial. So, is U2F pressing Acorda to prioritize human grade Chondroitinase or as asked by Paolo what group should push Acorda?
For whatever reason U2FP has not done what you and Paolo want them to do. Apparently neither of your fingers are broken so either or both of you could push Acorda.
Why don't you and/or Paolo do this? It's actually quite simple and if you feel confident that this is the answer, then go ahead and do it. Why is this someone else's job?
Bob, do you need Acorda's contact information?
So when will you and Paolo start pushing Acorda over this issue? Don't blow smoke, answer please.
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