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Thread: I want combo trials, and now!!

  1. #231
    Quote Originally Posted by cheesecake View Post
    The network is in place thru NACTIN for the CDRPA and has been in place for years.
    Forgive my ignorance, is there any therapy on deck that aims to restore chronic injury? Is there a website that maybe I and many others who are unaware the said network could check out? Thank you.

  2. #232
    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.

    T.J.

  3. #233
    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.

  4. #234
    Quote Originally Posted by Chaz19 View Post
    Forgive my ignorance, is there any therapy on deck that aims to restore chronic injury? Is there a website that maybe I and many others who are unaware the said network could check out? Thank you.
    Here: http://www.christopherreeve.org/site...rk.htm#Mission

    They are currently trialing riluzole which is for acutes.

  5. #235
    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?

  6. #236
    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.

  7. #237
    Quote Originally Posted by keeping on View Post
    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?
    I just sent another message and it went through fine.

  8. #238
    Quote Originally Posted by antiquity View Post
    I just sent another message and it went through fine.
    Ditto.

  9. #239
    Senior Member rdf's Avatar
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    Quote Originally Posted by antiquity View Post
    Click HERE to send a letter to Senator Harkin asking him to appropriate funding to the Christopher & Dana Reeve Paralysis Act Bill. Remember, no money = no research funding.
    Your signature should be made into a sticky Sen, in the funding forum.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  10. #240
    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.

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