[guido]

Hello all. I have just been sent this via email email and thought it may be of interest to others on this forum?

Guido


Reykjavík, November 2009

Dear Sir/Mrs/Ms

We are working on behalf of the Institute of Spinal Cord Injury with the mission to encourage the World Health Organisation to be open minded towards the discovery of a cure for spinal cord injury. In this weeks, an awareness campaign with television advertisements has been launched in the Scandinavian countries. The campaign’s goal is to attract people to participate in a petition that will be sent to the World Health Organisation.
For the last half a century there have been fast improvements in various fields of medical science, especially in the fields of cancer, heart disease and ophthalmology. Meanwhile, the search for a cure for spinal cord injury has progressed slowly.
We ask for your support and would kindly appreciate if you could forward this message to your members and colleagues. We would be very grateful if you could contribute this to the project. The matter of concern is worthy and makes a difference to everybody because you can’t foretell an accident. Following this letter is a link to the petition together with a link to our Facebook site where people can become fans of the project.
http://isl.isci.is/English

http://www.facebook....athTowardsACure

Thank you for your support.
On behalf of the Institute of Spinal Cord Injury
Jóhanna Dýrunn Jónsdóttir

[E-DOG]

Captain Gweed,
The problem is, no one gives a shit about us.
No money in it. Too few of us.

[guido]

E-DOG, on Nov 28 2009, 07:55 AM, said:

Captain Gweed,
The problem is, no one gives a shit about us.
No money in it. Too few of us.

Hey E-Dog - yes I agree with that statement as things stand.

Any government funding of science is horribly limited. Now although some will know from my personal site that I am not relying science to change my life, if something reliable happened, obviously I would still hope to benefit. My mother had a meeting with Professor Raisman two days ago. He is a brilliant scientist but never has time to work with his team because he spends all his time trying to sort funding. The government insists on quick results if they are to fund research. It's all very short-termist.

There is a bigger problem at stake and that is one of understanding: if we view science as a short-term speculative turn around then we kill it and the talent and intellect that comes with it. Many discoveries have become mainstream in the past, years, decades after the discovery, that would never have made it in today's market conditions. And certainly in the west, our governments are so short-termist they don't want to fund it.

However, when someone or a group look to make a change, then if it's a worthwhile venture it is worth support. I agree that change won't happen over night. But these things can grow. Often with a journey, one can set out with one aim or objective, but along the way, a chance meeting, result or realisation can bring about a real change or impetus that was unimaginable before.

(I do some work in Leipzig in Germany. It's an odd place with plenty of cold war hangovers. The Berlin Wall came down 20 years ago. And few people know how this came to be. It started in Leipzig with a few people meeting and protesting at a church, and cutting a long story short, it grew, certain officials made decisions based on fear or wrong assumptions about how to play this problem out, and bingo, the rest was history. It was a peaceful destruction of a regime. Protesters took over the Stasi HQ with no opposition.)

In the months that I have been on Apparelyzed, I have grown to like your posts very much. And I certainly wouldn't try to convince anyone of anything that wasn't logical. You are right that there probably isn't enough money to make real research for SCI viable, but people are motivated by different things. For a millionaire it might be to find a cure for themselves (Christopher Reeves) or a child or it might be a social entrepreneur goal driven by any number of motivating factors, for a government it might be to attract the brightest brains to their soil which might help the economy in the bigger picture, for a scientist it could be belief, ego or a nobel prize. The crucial starting point is profile and getting an understanding of the bigger picture into the right ears...

...and that requires a modest starting point and sustained effort by those who are prepared to make that their goal.

This post has been edited by guido: 29 November 2009 - 04:35 PM

[edlee]

That may all be true, Guido,, but petitions are not of much use on a national scale. Ask Topper about the one he was helping to push forward.

Everything costs money,,, more so everyday,,, the goals of researchers has changed from pure research to pure greed. Without the funding there are no research positions, laboratories, equipment,, which is why a potion of all reseach funding is spent looking for more funding.

The glamour diseases/conditions get the money,,,, our's isn't glamorous enough,, apparantly.
ed

[guido]

edlee, on Nov 28 2009, 09:30 PM, said:

That may all be true, Guido,, but petitions are not of much use on a national scale. Ask Topper about the one he was helping to push forward.

Everything costs money,,, more so everyday,,, the goals of researchers has changed from pure research to pure greed. Without the funding there are no research positions, laboratories, equipment,, which is why a potion of all reseach funding is spent looking for more funding.

The glamour diseases/conditions get the money,,,, our's isn't glamorous enough,, apparantly.
ed

I'm not going to try to win you over or cook up support. This is a forum and I'm passing on what I think may be of interest. I agree with most of what you say and I know that our governments are crass self-serving idiots who disregard most expert advice they are given.

They are too busy trying to grab the daily headlines. However, if we as readers faithfully accept what is said rather than questioning things and those decision and policy makers then yes, we are stuck. Ignorance is what changes society for the worse.

Our issue is glamorous enough to get a nobel prize to the person who cracks it. But yes, funding IS an issue. So maybe this is of interest to Topper? He can get in touch with the Icelandic group and see what information, donors, etc, they can share to the common goal.

There are people out there for whom pure science is an end in its own right, and the argument about science is a compelling one. Take a look at what Richard Noble is doing with his latest project BloodhoundSSC - one of the things that is rivetting about this is how he is getting it into schools to attract more students to become scientists. Often a problem is a combination of factors that all need solutions to get the result. And sometimes all the cards need to be in the right order before we get the change.

Oftentimes we don't need to have the answers ourselves (I certainly don't have them) because other people are working on them. And in the meantime we can get on with our own lives. But I know from my own ventures that every time someone takes the time to check in and write a message of support, encouragement or thanks, it makes me redouble my efforts. This is human nature.

There are a few key players on the scene. Some are excellent players and others not so - as has been proven. Each person must make up their own minds what they believe or choose to support, and this is easier when they have the info to hand.

Really, so many successes are half judgment and half luck.

[topperf]

Hi Guido - great initiative! - TV is a great media for gathering support for our cause.

I tried, as Ed mentioned, to get people to sign a partition a while ago and was only 'partly' 'successful'. We managed to get aprox. 8000 signatures and that is not quite the million we set out to get.. However, I did get 1500 people to join my cause on Facebook ( http://apps.facebook...6215?m=e56504ed ) and I will pass on the link from your post
I to believe that a cure is on it's way, I've turned every sci stone on the net since my injury, that was how I found apparelyzed 2 years ago. (ran into a post where the dog and Jim the rocker had a frenzy of some kind - so my first impression of the site wasn't great to begin with, but I grew wiser and understood what was going on, and that Dog and Jim combined always is madness)
It's gonna take time... and $$$$$$$ - loads of it. - but it's out there for the taking, and I know that things are happening here in Europe to. We will get there.