bob. Ive read his answers to questions on care cure the forum he started. I also saw the press release he supposedly made saying "there is no reason for doctors to tell patients they will never walk again". The other thing is that we don't know, so therefore it isn't logical to say how long regeneration takes, this science is at the threshold. Its going places that we have never gone before no one can say at this point what is possible and what isn't. I was just curious about your opinion and why you felt the way you do, thanks for that..
" A mans faults will outlive him tenfold, the good he does in life is often interred with his bones"
Tbone57, btw my son also has TM.
If you read what you said maybe you might begin to understand what I mean.
You said "no one can say at this point what is possible and what isn't" but yet it's ok with you for Wise to make those kind of "ground breaking" claims?
Not only that, these kinds of premature announcements are frowned upon by the science community.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
No, a different claim that-people are walking and doctors won't have to tell their patients they will never walk anymore.
It's so funny it's like people have no trouble believing there is an invisible man in the clouds that watches every move you make, but put up a wet paint don't touch sign and everybody becomes a paint drying tester.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
Your right tbone there were discussions on carecure-Soliciting from the sci, going to trial without first testing it on animals,etc
"The travesty is that many therapies are regenerating spinal cords and restoring function in animals but so few have gone to clinical trials. With JustADollarPlease.org you can help make this happen" as it appears on www.justadollarplease.org/about/
from the above quote you would think cord blood and lithium were tried on animals and it regenerated their spinal cords. Oh, by the way the site justadollarplease is not functioning properly.
Being Carecure is not working properly either these posts can't be found, but when I saw them I saved them.
The one below is by Dr Silver.
I urge people to utilize the NIH "RePORTER"to investigate whether those scientists who solicit funds from the SCI community do or don't have NIH funding. Just type in the name of anybody you find interesting and their funding support (which is a matter of public record) will appear. These are the most trying times for neuroscience funding and research in general that I have ever seen in the US. I have been involved with NIH study sections for much of my scientific life and I (like most of the rest of us) rely on government grants to survive so I have a first hand idea of the decline in funding percentage. While the number of scientists has steadily increased over the years the total dollar amount allocated by Washington for NIH grants has remained relatively flat so lots more people are competing for the same pot of money. Competition is fierce and at the NINDS (which is the funding agency that handles most spinal cord stuff) only the top 5-6% of grants can get funding. This is down from an average of about 25-30% in the good old days. While this helps limit the numbers of scientists who are non-competitive it also limits the number of grants that a single lab can hope to get. Typically, a properly functioning lab within a university needs at least 2 full NIH grants and likely some smaller grants from private funding agencies to move along at a slow but steady pace (about half a million per year). We have to pay for a large percentage of our university salaries as well as that of all the others in the lab and this is before we can buy supplies, animals and equipment etc for the all important experiments I usually have a group of about 6-7 people including me and my 1 technician in the lab and thankfully I have done a pretty good job of competing for the little pot of money that remains in such a lousy economy. So now the question remains, how can we move faster towards potential cures for SCI? My suggestion is that the money that is available (which is considerable) be better targeted to those labs that may make a truly profound impact rather than being squandered on labs that promise great hope without strong science (ie., false hope). This problem is rampant in the SCI funding arena and especially in relatively small, private foundations who tend to lack strong scientific advisory boards and fall prey to these "snake oil" sales people. My suggestions: (1) urge your local, private funding agencies (like Step Ahead Australia) to do a better job of due diligence before they give large sums of money to a single lab and (2) urge your local as well as national funding agencies to focus on "CHRONIC" SCI which will surely target much more money to help those who are already suffering (3) be extremely wary of those who solicit money from the SCI community and make absolutely certain that such labs are currently competitive for governmental grants. Those who solicit this way tend to lack NIH grants so they are desperate for money and will promise anything to get it.
It is my belief that, at a minimum, any clinical trial that involves potential harm to people and especially those who are already at risk due to SCI, should be backed by solid, at least minimally effective, independently replicated pre-clinical data. I find the rationale untenable that we should go boldly forward into human clinical trials without even an attempt to have duplicated as best a possible in an animal model the proposed human strategy. Basic research helps us to show robustness of effect and helps shed light on the mechanisms at the heart of the recovery or the lack thereof. Ponder this scenario: several good labs independently combine X+ Y at a truly chronic stage ( eg minimum of 6 weeks post injury) in a contusive rat ( or better yet pig) model of SCI and report absolutely no improvement and , indeed some decrement in function. Results of x+y at acute stages has minimal bearing on what might happen at chronic stages. There are many known as well as unknown factors that change as time passes after a lesion. OK, so now we do go boldly forward even with concerns and a patient here or a patient there minimally or even remarkably improves after treatment. So now what do we do? Small n's are very confounding because we don't know at all what the mechanisms of recovery may have been nor have we the ability to logically tweak the treatment to improve function based on solid scientific rationale. More cells, less cells, different cells, different injection locations, different route of delivery, more/less X related to Y........ and yet you propose to experiment with these basic paramaters that are so easily examined in animal models , in people. So, my answer is YES definitely hold off ever "experimenting" in humans and for heaven sakes no money should ever be solicited from an already financially strapped and struggling SCI community to pay for such high risk experimentation. This is my opinion and mine alone. Frankly, I don't have a cord injury so I could never ever put myself in the place of all of you who do, so I can see where many wish for clinical trials ASAP no matter the cost. After so many years of hype and unfounded promises of "within 5 years" I can imagine the frustration. So we have now entered a period of stem cell feeding frenzy with clinical trails popping up everywhere. I have great hope that stem cells will offer benefit at acute stages. They have powerful neuroprotective effects, but I see nothing credible (except maybe for Anderson/Cummings, Stem Cells INC, I think) of their effect at chronic time points after SCI. If you learned that pre-clinical data using the very treatment that you are about to get was safe but totally ineffective would you still go ahead with that treatment? If so you have my blessings but I would like to first see a concerted effort in animal models to improve the odds.
Dec 19, 2013 17:58:10 GMT -5 tbone57 said: I think we are too passive,but with reason. Physical limitations are a big hurdle to overcome, and we need need help, its hard to figure out what to do and where the noise should be directed. I watched a documentary on netflix about the AIDES crises in the 80s and it was just amazing how the gay community came together and they really did get results. Not as easy for us and paralysis isn't something you can catch. So frustrating at times Lαrα.
You are 100% right tbone. Part of that is discussing the different players in the arena. In the past that wasn't possible at least in a constructive way because some bought into the idea that the researcher being spoken about was the messiah and he was going lead us to the promised land.
It has been really helpful having this additional information to read...Im of the opinion that it is early days for any conclusion to be made on the effectiveness of the success on the trials led by Dr Wise.
Time is going to tell..the answers just dont seem to be there that are needed to clarify anything..but this is the problem..too many unanswered questions
No offense to Dr. Young but I truly believe that many, if not most people here gauge and pin their hopes on every utterance that he shares.
The rest of us, it seems, are mere fodder and sheep who can do nothing for themselves.
Dr. Young is a leader by virtue of his commitment but my guess would be that he doesn't relish the role, much like CR didn't relish his.
Why everyone thinks that the sun rises and sets on one particular individual is beyond me and is quite sad. The solving of the riddle of paralysis is one that will only be solved by the collective community.
Until most of the CC community realizes this I'm afraid that most members will simply act and react on the direction of one when in fact it is each individual's responsibility to learn, support and lead for themselves.
This to me is an inherent problem to CC. The relying on one individual to determine our aggregate direction is misguided, wrong and makes the community more vulnerable than necessary.
P.S. Suzanne, god love you but I think if I read one more post about you gushing over Dr. Young I'm going to have to call your respective spouses.
Post by kilg0retr0ut on Jan 17, 2014 7:11:22 GMT -8
I guess I'm a sucker and a sheep. I donated to Justadollar, not because I was promised a cure. I was in a re-hab hospital, besides staff I was the only walker on the floor. At the end of the hall was the childrens wing. Thats why I donated. I guess I'm a simple guy that hasn't the knowledge or time to research all that is happening in the SCI community. Even if my money was just used to fund the CC website, I'd feel like it was money well spent. If I've been fooled, it wouldn't be the first time. Thanks for the education. I think bob is doing a good thing by questioning. I wish all these different factions could be pulled together to work for a cure.
This would take a great motivational speaker to inspire and motivate others paolo.. The movement would need financial backing so workshops can be held where people can become educated and develop their understanding of the science. Could this kind of set up request to become a non profit organisation?
People should be given responsibilities and tasks according to their skills. One part of the movement can focus on media attention, another part that deals with campaigns and petitions to the powers that be.
Then another department deals with negotiating with scientists and institution. Work at getting the criteria changed for grant applications and push for higher proportions of donations to go to 'cure'.
Define clearly what cure research is.....then spread the word..as you guys do ..just thinking out loud, i really dont know so much about this kind of thing
Yes a motivational speaker is very important. The first that comes to my mind is Roman Reed, but is focused on California especially now that he is running for the california senate. There are others around. I am sure we can find one. About financial backing, workshops and non profit org., this how and why U2FP has been created.... In my personal opinion they have done a good job in the past, but the impact thay have had has been to small and didn't change things significantly. So I am starting to think we may need an alternative. All other considerations you listed also make perfect sense to me At the moment we miss the people educated weel enough to do things right, I believe. #Knowledge BTW I don't consider myself a person with enough knowlede.
Christopher Reeve though was a one man show. After he died, through the use of the internet and Carecure I initiated action to have a rally for cure action, members were excited and they decided to let Dr. Young pick the venue. When, he finally told us I couldn't believe what I heard. It turned out to be a fund raising dinner for the Keck Center. So, a year went by and I thought maybe this time we could get some grass roots advocacy going. We did, but wouldn't you know although there was talk about being independent of Wise, later that year in an article in Esquire Dr. Young took credit for the rally.
In April, he led the largest wheelchair roll on Washington in history.
Read more: Stem Cell Policy - Lobbying to Reverse Bush Funding for Stem Cells - Esquire Follow us: @esquiremag on Twitter | Esquire on Facebook Visit us at Esquire.com
It's so important to remain grass roots. I would have thought having the internet would be an asset to advocacy whereas the aids movement did quite well without it.
To properly use internet is our only chance of success. The AIDS movement started to become powerfull when thay started to have good medications that allowed them to travel and get together in large number. You can't do that with people with SCI. To travel for us it's too hard and to expencive, so it will not happen, it's hard to get more than 50 people in w/c in a SCI research/advocacy meeting, while AIDS people could easily get together hundreds of people to, for example storm the NIH as they did in May 1990.
How to best use the web tools is an open question (for me) that should be answered after clear goals are determinated. To have an FB page with 10000 likes is relatively easy, but without goals is useless to make a cure happen.