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Thread: "It's Time to Make Our Own Miracle"

  1. #11
    Agreed. We can develop therapies now if we focus our efforts and resources on a single, well-defined goal, like restoring hand function to quadriplegics.
    "I'm lost. I'm no guide, but I'm by your side." - Pearl Jam

    "It decomposes, mendicant, therefore, truly, one calls this the world." -- Loka Sutta

  2. #12
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    Keep us posted on your efforts and let me know if I can do anything from here.

  3. #13
    Hi Rick,
    A committee would be great and long overdue. I too wish that all foundations could pull in the same direction, but I fear that convincing those that have supported certain efforts for eons to redirect funds is almost impossible. That being said, after a few emails and teleconferences, I think I have planted a seed with a major spinal charity here in the UK. The advisory board is now being persuaded to issue more 'call outs' for translational chronic research as opposed to the favoured basal, acute and graduate routes. This is significant because we are now in a situation where solid approaches need to be brought to the bench, so hopefully they will opt to further support these in the near future.

    As for channeling towards one lab, from a UK perspective, sadly I'm not sure that will happen. Bar ours, the few spinal charities that exist in this country tend to fund one particular UK approach, for example. In fact, two of them solely support this particular lab. I have presented the facts including publications, articles and opinion all pertaining to other approaches with stronger pre-clinical data, but to no avail as yet. They have built up a rapport with that particular Scientist and will not cut the purse strings, so to speak, in favour of another approach. This is despite, in my opinion, the avenue in question not being perhaps the most fruitful of those available to us. I suppose this highlights how competitive the research dollar/pound really is and how those that fundraise around certain Scientists and labs can become quite attached and protective of the work and the individuals behind it. I guess it's understandable due to having to tout the research to procure funds from supporters, as well as to recruit new ones. Also, many of the people behind these org's are so passionate about the cause and will really buy into the particular approach, which is a phenomenal thing if efficiently directed.

    The reason I branched out on my own rather than supporting an existing charity was because I recognised a need for a charity that solely supported chronic research with a clear path to the clinic, the research that can address every injury. I think the only thing we can do is to continue the fundraising, place it with the lab/s whose data and projections the foundation/individual/group has the most confidence in and try to educate and spread awareness about the need to sometimes look a little further afield as we go along. I guess an efficient committee needn't incorporate every charity anyway, just as long as the passion and direction exists right?

    I don't think it's a secret whose lab we personally place our faith in currently. This is due to the fundamental science and results shown thus far. If the other charities in the UK will place a bit more emphasis on overseas research, hopefully they'll agree that they could perhaps get even more mileage for their stirling. Even for some US charities also, a shakeup is long overdue. Some org's are, by nature, oftentimes all too happy to follow tradition, but as we know - long supported avenues are not necessarily always the best ones. Arrrrgh bureaucracy! It's a great idea though, and I'm ever the optimist. Were you thinking globally or mainly within the US?


  4. #14
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    Cherry-
    It sounds like you have already given this a lot of thought, thank you. I probably threw this idea out a little premature without thinking through the whole plan but I'm happy it's being recieved well by all of you. Maybe we can all work together on a comprehensive plan.

    I'm a pretty random thinker but let me just throw out the thoughts I have...

    This idea/plan is a pretty tall order and maybe I am just naive but I want to think that the non profit foundations in the SCI community would want to work together in a positive constuctive way to achieve what I perceive to be the common goal: "return as much as possible as soon as possible of what was lost due to spinal cord injury or disease".

    It is probably unrealistic to think every foundation would support this idea but we won't know if we don't try, kind of like clinical trials. My original thought was US based foundations but I see no reason why it couldn't be international, "International SCI Oversite Committee" has a nice ring, I'm not even sure that's the correct name, we can work on it.

    I understand each foundation has it's own goals, objectives, preferred labs and researchers they support but my hope is we can all look at the bigger picture objectivley and unbiased and combine our efforts to achieve some concrete results sooner than later. After all this is private donated money and it should be put to it's best use, I'm sure that's what the donors had in mind when they made the contribution. I feel there is strength in numbers and we can achieve much more united than working independently. I don't believe the foundations would have to abandon what they are currently supporting. My wish would be that they could come up with some amount annually to set aside and earmark for a project or projects that this committee decided were worthy of support, with each foundation making a contribution towards a given project. By having an estimated budget the committee could understand how many and what type of projects it could afford to support, hopfully that would be multiple projects from different labs.

    Here are some of the steps that I see need to take place:

    Come up with a solid proposal to present to foundations
    Recruit membership from the same
    Understand potential overall budget
    Develop Scientific review board
    Solicit chronic injury pre clinical development proposals with mile stones and timelines
    Review proposals and understand cost to complete project
    Committee to vote and select which pre clinical projects to support

    Here are some of the areas I think the oversite committee would focus on: (after we get something in the pre clinical pipe line)

    Create awarness for the need of research funding though a media campiagn
    Create National/International fund raising campaign
    Work to develop relationships with big Pharma to fund clinical trials based on the success of the pre clinical results/approvals
    Develop plan to lobby health insurance companies to support the coverage of these treatments and the necessary rehabilitation.


    There are probably a bunch more things to add and reorganize but I'm all out of random thoughts and time at the moment, feel free to interject your thoughts.

    This is pretty exciting....
    Rick

  5. #15
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    Eks posted on the Cure forum about Wings for Life foundation's meeting of the scientists they support. They seem to have a similar model to what you are thinking about. It is worth a read. The thread title is Redbull gives you wings...

    Again, let me know what I can do. I am not real well connected but I can try.
    Last edited by momo3; 10-24-2008 at 11:12 AM. Reason: add info.

  6. #16
    Well said and thanks for saying it Rick, I've been having this conversation a lot these days.

  7. #17
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    First, it will fail stray without organizing.

    And there will not be any big money and strategies without doing so. But one could always hope.

    But if organized, more money is and could be gathered if working from the inside, and more important if so, to make the medical research systems more research and clinical trial speed up friendly, by positioning ourselves.

    I personally don’t anymore believe in single ideas swada, no matter how good they are and how to do things etc. There has been tonnes of that in the past - what I do believe in, are to get involved in the processes where decision-making is done.

    Folks, there are no short cuts when it comes to fix chronic SCI, stop living in a dream world.

  8. #18
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    Quote Originally Posted by rjames View Post
    ...
    Here are some of the steps that I see need to take place:

    Come up with a solid proposal to present to foundations
    Recruit membership from the same
    Understand potential overall budget
    Develop Scientific review board
    Solicit chronic injury pre clinical development proposals with mile stones and timelines
    Review proposals and understand cost to complete project
    Committee to vote and select which pre clinical projects to support

    Here are some of the areas I think the oversite committee would focus on: (after we get something in the pre clinical pipe line)

    Create awarness for the need of research funding though a media campiagn
    Create National/International fund raising campaign
    Work to develop relationships with big Pharma to fund clinical trials based on the success of the pre clinical results/approvals
    Develop plan to lobby health insurance companies to support the coverage of these treatments and the necessary rehabilitation.
    ...
    Rick
    A clear mission statement backed up with specific objectives and methodologies to obtain the objectives will help focus the 'committee'. You aren't going to do this alone. There are many people here that agree that the efforts to cure spinal cord injuries would be more effective if they were more coordinated. Figuring out a good way to go about coordinating will not be easy but I believe with the right group of people working together it can be done.

    I suggest putting some effort into a mission statement. Get some feedback from people you respect.

    You have offers from people to help and maybe you can start taking people up on the offers now. Have someone start collecting names, areas where they would like to contribute, and what skills they bring to the table.

    I'll help. I am willing to put in a two hours a week for two months. I can use a computer, am reasonably proficient with office productivity software (word processing, spreadsheets, presentations).
    Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  9. #19
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    my "cure in 5 years" well is dry also. it seems to me that we can donate here and there, but we seem to be donating to nothing that is progressively working towards a "cure" for spinal cord injuries. It would be nice to find one place,person,or thing that just concentrates on helping US so we could all pool our concentrated effort in to helping US. I put "US" in capitol letters because we as a group do not care about politics,religion,money,economy, etc. etc. all we know is when our eyes open every morning we will drag our ass in to a wheelchair (sometimes covered in our own urine or the ever loved bowel movement) and start our day in a world that has nothing but limits on employment, accessibility, and enjoyment. Seems there is no limit on frustration, anger and reasons to not make a "cure" #1 on the list. Who here would not give up the last 20 years of their life to go to work, walk up stairs and then come back to a home they could afford and have normal sex with their spouse? give me that 1.....if i could bold print and underline in italics....that 1! place we need to pool our money I would eat spam and lawn clippings to donate all my time and effort to it. don't talk to me about miami projects and reeve foundations..etc.etc....they have had their 5 years.. apparently lip service and "social awareness" does not help me care for my children or put food on the table or make my days on earth any more enjoyable. Life in a wheelchair sucks no matter how rose colored the glasses you are wearing. where do we go to help US? sorry if i seem mad. i love my wife and my children, but this last statement defines me and a few other 100,000 ( don't take this as sexist racist,republican,angry or whatever). I have to go tend to my 2 beautiful 9 month old girls that were born through vibration therapy and electroejaculation and finally sperm extraction from the testicles (90% out of pocket) and IVF (i am guessing $10,000 each)in my $3,500 ultra lite wheelchair that may last 3 years at 2 a.m. after i pee through a $1 tube for the 8th time today after taking $30 worth of pain medications for nerve pain, hoping I don't crap myself while reaching in to a pain in the ass "accessible" crib because my wife works nights as a nurse for the sole reason I had to leave my $100,000 a year job that i am still paying college loans for.......get the picture? this is bull shit........where is the 1 ONE can you hear me? 1 place we ALL need to concentrate our efforts?

  10. #20
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    rjames I am with you. i can not imagine how painfull this is as a parent to have to go through....my parents went through raising a son that played football,baseball and wrestled and raced cars to see a guy that can't change a damn light bulb.....i am in the rjames fan club.

    not to make light of this subject, but RICK JAMES BITCH.

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