Lynnifer, I'm in no position to judge your condition; both physical and mentel. I can't even tell you to hold on for a cure of some type. I can't even imagine what you are or have gone thru. I can only say that I wish you the best, whatever that is. If you see anything that is relevant to our discussions, plese let us know; we value your input.
More information about NACTIN is here: http://www.christopherreeve.org/site...rk.htm#Mission
Someone correct me if I'm wrong but none of the NACTIN sites are participating in Wise's lithium/UCB trial hence the need for additional money for the SCINETUSA.
The CDRPA Bill put before and signed into law by President Obama contained no research funding mandates. The desire at that point was to get the bill passed and concentrate on funding it later. Senator Harkin has been a long time supporter of the CDRPA and it is his committee that is now responsible for funding titles I&II. We are currently in the throes of a severe recession with calls for immediate federal spending freezes from the opposition. If they get their way, pet projects like the CDRPA bill will be discarded as too expensive/wasteful/unnecessary. So the cure community needs to make Harkin aware that the CDRPA bill is still very much a priority to us and needs to be funded ASAP. Most SCI researchers look to the NIH for funding. Without a mandate demanding that additional monies be allocated to cure research, the pace of research will either remain as it is or slow even further.
Trying to send another letter or message to Harkin. It won't allow me to post my zip code; is this a trap or what?
Is this discussion going to go on for ever? Are there not a few members who are willing to step up to the plate and start acting? Talking in circles is not going to do a thing for getting clinical trials started.
A few members can expand private sector efforts to raise money, such as one dollar a day.
A few can develop a lobbying effort. Identify some SCIs around D.C. who can access the capitol offices.
Some can identify possible lobbyists in each state that can access home offices and get them moving.
Others can write letters.
If any are interested in hard ball politics, they can take the message to the candidates who are running in the fall by injecting questions into their debates, etc.
If there are members interested in organizing a rally, go to it.
There does not have to be one CC way. The only consensus that is important is whether you think clinical trials are important.All the above approaches are valid. It does not take large sums of money or thousands of people to do most of the things above. I just takes people who are willing to step forward and lead and organize. It has never been easier with the Internet and cell phones now available.
Somebody is going to have to start. Clinical trials waiting and elections are in the fall.
Those who are not interested can be told to buzz off.
sci55- Believe it or not, the ideas of many community members discussed here are what lead to action in the form of 2005/2006/2007 political rallies in DC. But -yes I think we should identify collective goals.
Thank you, Antiquity.
The link to Sen. Harkin worked for me as well.