Indeed bob..that would need someone to take the initiative and develop it onto an action plan :)Im interested in this subject so if i can do anything then count me in
In my experience the most difficult part is Knowledge & Solutions as this is where I have seen all SCI cure activism getting lost and so we don't have results.
In the video they say that probably you need between 50 and 100 people with enough knowledge to sit at the table with researchers and institutions, propose smart solutions and being taken in consideration.
To learn scienze, how the sistem works, etc. well enough to be able to propose practical solutions it's not a pleasure so people have to force themselves to do that most of the times.. At the same time SCI life it's a daily torture and to read a scientific paper can be a form of torture for many (including myself) so the result is that we have too few people with SCI with enough knowledge to propose solutions as the AIDS people have done.
To have a great leader that show the way would probably get more people to try to build the needed knowledge. We use to have Christopher Reeve who IMO did a great job with that, but now I don't see a leader or an SCI org that can lead the way...
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
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.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
bob, maybe you can enlighten me on this matter. Ive noticed that yourself and a few other members both on this forum and another I had belonged to seem to have a vendetta with Dr. Wise Young. Now I want you to know that he's not a friend of mine nor do I view him as the patron saint of the paralyzed community. Ive been to the Keck center and listened to him speak, I met him at another fund raiser where he spoke briefly. Both times I listened to him speak he seemed intelligent, committed and really sincere. I never got the impression that he was basking in the limelight of his notoriety, in fact he appeared just the opposite rather humble and in the background. In researching him on line it seemed he was trying to abstain from releasing any results of his studies until all the data was compiled which I felt was a prudent thing although difficult with all the prodding and oblique questions he has responded to. Am I missing something? I don't understand the bad press he's getting after spending a good portion of his life pushing research and trials in China and here and other places. Please enlighten me.
Where are you getting your information that he didn't leak any results about two years ago he was leaking results that people are walking. Regeneration takes time it would be impossible for people to be walking from regeneration in a few short months. Some people have mastered the art of coming off humble did you ever hear of the wolf in sheep's clothes. And then there are those no matter what evidence you give them they still want to believe that he will kill them.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
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"
Christopher Reeve was a very high profile individual with SCI...This must have been a crucial factor in the success of his endeavors bob?
I'll answer both questions here and it has to do with Christopher Reeves number one the Christopher Reeves website makes it very clear that Dr. Young was leaking information early. So much so that not even one US news source picked up the story of people walking. Number two Who had successful endeavors Christopher Reeve or were you talking about Dr. Young Lara?
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
When Christopher Reeve was on the stage by himself and he talked about a cure and how much money it's going to cost it was hard for the public to say yes let's cure Christopher Reeve he needed more people he needed a room full of people with SCI Yes Christopher Reeve got attention but people like to help the guy next-door they need to see that it could be themselves
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
When Christopher Reeve was on the stage by himself and he talked about a cure and how much money it's going to cost it was hard for the public to say yes let's cure Christopher Reeve he needed more people he needed a room full of people with SCI