I want combo trials, and now!!

[lynnifer]

Then why no treatments or progress in Canada ... or Norway ... or Australia ... or the UK ... or South Africa, home of the first heart transplant!?

[swh2007]

Originally Posted by Leif

Just a comment swh: First, I don’t find ppl here bad or anything like that, just to say that. I personally have no beef with any from my side and all are doing what they feel like to do. So that’s good. Secondly, nothing wrong with CC, but it is a public bulletin board, thus discussions often will get astray for example like in this thread. That is the nature of public bulletin boards, and that is fine too. Still, several ppl has connected here, on boards like this, just look back a time as for the US effort on the CDRPA, although the bill could have been better, it was some ppl from this website whom pushed it, as I understand. But to think one will have uniform, straightforward and constructive discussions all the time on public bulletin boards I believe will be difficult. But, there is a way of fixing that too (just an idea). For example here on CC there exist this woman only “closed” forum, also a “closed” forum for caregivers. Which is also all good. So, how about creating a “closed” forum for discussing SCI cures? Where one must apply similar like for the woman and caregiver forum to attend? And then if not behaving, bye bye, out back into the regular cure forum never ending circle discussions

I would like to see such a closed forum because I think CC is one of the few places that the SCI community could decide its goals and how to implement them. But that's just me.

[Leif]

Originally Posted by lynnifer

Then why no treatments or progress in Canada ... or Norway ... or Australia ... or the UK ... or South Africa, home of the first heart transplant!?

What you mean by no progress? We’ve just decided to take back the Northwest Passage and buy a couple of Canadian provinces.

[Fly_Pelican_Fly]

I have to admit that I dont know much about research in Ontario and Canada in general but would it be possible for some Canadian clinics/labs to join SCINetUSA rather than re-inventing the wheel? Experience needs to be leveraged where it can and SCINetUSA has already made some headway from an infrastructure point of view.

[DA]

Originally Posted by Wise Young

swh,

Please allow me to put my post into context. For the past decade, DA supported the Bush administration which stopped both CRDPA and SCREA, not once but twice through Senate holds and Presidential vetoes. Now, DA is railing against the Obama administration and is making misleading claims about how NIH is against spinal cord injury research.

My points are that people in the spinal cord injury community must tell their politicians that they care about spinal cord injury research and clinical trials. Politicians don't pay attention to scientists asking for more research money. They pay attention to constituents and people in wheelchairs. When the spinal cord injury community doesn't push for research and clinical trials, politicians conclude (and correctly) that the community does not care. Why should they fund the research when the community doesn't want it?

My question why it was my responsibility and not his responsibility to push for research funding was intended to ask who is responsible for raising money for research. DA and many others seem to think that it is somebody else's responsibility. DA is willing to blame others but not himself for the failure to fund spinal cord injury research in the last decade. He and others prefer to believe that there is a conspiracy against spinal cord injury than to accept responsibility.

Some people here are saying that they are losing hope this year. I have been puzzled by this development because there is more reason for hope now than at any time in human history for cure of spinal cord injury. We have made more progress i the past two years, despite cuts of NIH funding and a paucity of clinical trial funding, than in the preceding 8 years.

Scientists can't complete the task of curing spinal cord injury alone. You ask what I want the spinal cord injury community to do. My answer that the community must first decide what they want. I am not sure that the community wants more spinal cord injury research and clinical trials. If there is no community consensus on this issue, all efforts to lobby for increased research funding and clinical trial will fail.

There are so many things that the community can do. People can donate a dollar a day to http://justadollarplease.org to get chronic spinal cord injury trials going in the United States. People can write to Senator Harkin and their representatives to appropriate funds for NIH to implement the CRDPA programs that they have already passed. People should tell representatives to fund spinal cord injury research. People should donate to their favorite spinal cord injury research funding organization.

Wise.



Wise.

that is just a flat out lie. why do you have to lie?
i wonder what else you would lie about.

i made it clear plenty of times i didnt support bush on restricting esc. i posted many things i disagreed with bush. but because i supported some of bush policies, so dr young and left spin the lie into me supporting everything bush did. dr young, i dont worship politicans like you do. i have a free mind to decide my opinion on my own.

your post is full of lies. it even has a tone of there is no cure because of DA. i have lost all respect for you. go to hell.

[lynnifer]

Originally Posted by thehipcrip

You are a true leader.

Thanks, but *definitely* not deserved. So many here have done so much more and continue to do so.

I've definitely given up.

I could go on but it would just be negative and discouraging. There's no point in discouraging others. I've made my stance clear.

I will join the Rick Hansen run again this year (after a hiatus due to illness) ... this time hitting up the police/fire associations (four of them) that I dispatch for and requesting $250 from each to celebrate Rick's 25th anniversary of the Man in Motion tour, as well as my 25th year of paralysis. Hopefully they give more and there will be my own donation as well as family/friends.

The best I can hope for is that it goes to quality of life funding ... though I have yet to benefit from anything I've donated to!

DA your post has gone too far ... Dr Young doesn't deserve to be told to go to hell. I'm frustrated too. The last 25yrs haven't been easy as a para - a young one at that - and I can't even begin to imagine all those years as a quad. I never take for granted the independence that I have but I acknowledge that I may lose it in the next twenty or at least, these coming years will not come easy.

I think you owe Dr Young an apology.

Maybe efforts would be better centered on encouraging young scientists to study spinal cord injury. Our favourite researchers - or at least the ones most chattered about here - are all 50+ and counting.

[stephen212]

Originally Posted by DA

your post is full of lies. it even has a tone of there is no cure because of DA. i have lost all respect for you. go to hell.

I've always been of the opinion and practice that the bulk of DA's postings do not dignify a response. I'm breaking that self-imposed injunction today.

DA, That was an unfortunate and ban-worthy utterance.

Clearly you won't miss us, and frankly we won't miss you.

[SCIfor55yrs.]

When people's quality of life is so deeply affected, it can be discouraging to not see rapid progress. However, science seldom finds quick answers as in an "ahah" moment or accidental revelation. In real life however, science proceeds in baby steps or like building a house one brick and board at a time. Often times, there are stumbles and failures along the way that slow things down. But even they be useful if they redirect resources and attention to still viable alternatives. Wises recent report reflects a lot of activity that did not exist just a few years ago. From my perspective, substantial progress is being made given the fact that we are dealing with one of the most complex and difficult matters that the medical and other scientific communities have tackled.

I invest time, energy,and $ because sci is not a good thing, not because I expect to benefit directly. Knowing that i am contributing is my reward. As a scientist, I understand the need for patience and persistence. I am grateful that Wise has those qualities. It is because he understands the importance of finding a cure that he is hanging in there.

When you get tired and frustrated, take a rest but do not throw in the towel. If Wise and his colleagues did that, there never will be a cure.

[swh2007]

Originally Posted by stephen212

I've always been of the opinion and practice that the bulk of DA's postings do not dignify a response. I'm breaking that self-imposed injunction today.

DA, That was an unfortunate and ban-worthy utterance.

Clearly you won't miss us, and frankly we won't miss you.

Well, I for one totally disagree with what DA said, but I still want to know what DA thinks the CC membership should try to accomplish and what he thinks we should do to be successful.

[keeping on]

When looking and digesting Dr. Youngs posts, it is clear that his efforts are leading the way to human trials. I, along with others, an frustrated by the time line of his projects. I'm understanding or trying to understand the need for care adn procedural regularity in these trials. But, I can't help, but believe it is coming. Hopefully this year 2010 will yield some psoitve results and other trials will begin with simialr results. All I can say is my firend who has been paralyzed for 11 years has begun using a FES cyckel. He started seeing muscle activity after 10 sessions. what this tells me is that he will be ready for treatment ina way that was never expected in the past. This is a small, but significant example of new findings. I hope we get more positive news soon.