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"It's Time to Make Our Own Miracle"

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  • "It's Time to Make Our Own Miracle"

    It seems like every where I turn I read about somebody with a spinal cord injury wanting, wishing or praying for a miracle to fix their injury, and being the parent of a 20 year old son with a spinal cord injury I want the same thing every single day. I feel that it's time for a change and to take progress into our own hands. I believe that all the Private SCI foundations, collectivly as a group, have the power and money at their finger tips right now to make a change in your lives or the lives of our loved ones that are suffering from this injury and potentially millions of others around the world. We don't need to wait for someone else to fund the cure.

    Our family has only been involved with spinal cord injury for the past 3 1/2 years since ours son's accident and in the begining we felt like if there was a good time to suffer an injury like this now was the time, due to the fact the research was moving along so quickly and so much progress was being made. We were very optimistic about the possibilities of a cure in the near future. I had some "SCI old timers" tell me that when they were first injured some 15 to 20 years ago, they were told "a cure is 5 years away, well that 5 years has come and gone several times over". My response to them was "Well it's different now, look how much progress the researchers have made". 3 1/2 years later I'm not so sure it is different and I'm not quite as optimistic, it feels like we are treading water and with no real focus on what to fix first, Acute or Chronic, The scar or the myelin, astrocytes or motor neurons. We need a plan, I don't want to want to hear "In another 5 years" to be the case for my son or anyone else for that matter.

    There have been great strides made at the State level to support research like what took place in California thanks to the tireless efforts of people like Don and Roman Reed. Hopefuly with a change in our countries leadership it will change at the federal levels in the near future as well.

    This is where the private foundations come into play. It seems like the current private SCI foundation communities focus is to do bascially 3 things, spread awareness of SCI, Help with quality of life issues and support "Cutting Edge" research". There might be a few more but these are the one's I read over and over on the mission statements of all the major foundations websites. I think we need to change our communities focus, in my opinion no one really cares about awarness of SCI until they have one and then the resources to deal with the initial emotional "Oh my god what do I do?" period are lacking at best. Quality of life? what would better for that than to fix this injury or at least give some improvement? Research? My opionion is that there is enough on going basic research going on and duplication of that same research. If I hear one more time that a rat was made to walk or someone eles is trying to make myelin I'm going to scream... This stuff has been done over and over for years , we need to move on. Spinal cord injury research has been going on for the better part of 30 years with millions of dollars spent and what do we have to show for it in the way of a cure? Nothing, Nada, Zip. We need to push one viable research project across the finish line, just one.

    This is where I feel the existing private foundations can really make a difference. We need to let the state and federal governments pay for the on going research through their grant systems and the Private foundations need to financially support current promising research projects that are in the lab now through the pre clinical trial stage. I feel that's where the real short fall of money is. Right here on this forum both Stephen Davies and Hans Keirstead have been asked what would speed up their work and they both answered "more money". There are research projects in labs around the world right now that show huge potential to repair parts if not all the areas of spinal cord injury. We need the private foundations to work together to fund this work into trials. Can you imagine how much would be learned by the success or even the failures of these trials? Can you imagine how much attention and money would flow into the spinal cord injury field if it was shown that even a small part of it can be repaired? Not to mention what it would do to dispell the notion that the central nervous system can't be repaired.

    There should be a national committe formed consisting of a representative from each private SCI foundation to focus our communities efforts and the best way to spend the dollars raised through the various fund raisers that are held each year. There are only so many donated dollars to go around and we should be using them wisely. Do this... a google search of the major foundations, how much they bring in and where it goes, you would be amazed how much money is generated.

    We need to have some real progress now and together we can achieve it. I really don't want to take any more phone calls or answer another email from a newly injured person or their family member and have nothing for them when they ask; "What procedures are avalible to fix paralysis?" and I have to say; "nothing right now but be patient and stay as healthy as you can, it should be here in 5 years or so...."

    Rick James, Sr.
    Last edited by rjames; 10-22-2008, 04:21 PM. Reason: spelling, I don't have spell check

  • #2
    well said
    Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

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    • #3
      Well said, Mr. James. I too was told "five years" after my accident last August.

      This is the first time I have posted, but I have been reading this forum for many months now. I have to say that after reading dozens of posts concerning support and/or funding for research, I find there is always a critical element missing from the argument. Why is there never any "strings" attached to the funds requiring mile-stones in the research? I do not mean to trivialize the researchers or what they are up against by tying thier hands or asking for the impossible, but there has been an enormous amount of money (both public and private) spent only to deliver no real results. I find this to be unacceptable. What have the years of contributions and grants for research purchased?

      I pray every night that some poor, overworked researcher stumbles on to "The cure to SCI" and delivers the masses of SCI sufferers from this hell (allowing him/her self to become a household name in the process). While I feel that we all need to continue to contribute and campaign for research dollars, we should also have the right to expect results, right? I just wish that someone would show some real progress into the cure so that we would all have a target to direct the funding. It would be so much easier for us (and our advocates) to ask friends/family/civic organizations to donate and demand funding from our legislator's to help facilitate a cure if the science was backed up by results. I think the reason why donations and funds for SCI typically lag behind that of other ailments is because of the lack of any good news or real progress.

      Money is definately a critical element to finding cures to devistating conditions like SCI, cancer, ALS, MS and so on, but we cannot expect anyone to issue blank checks for empty results. Perhaps when specific demads are made, the research will deliver.

      So, instead of the tired phrase of "5 years", let's just hope that we are "3 years from the cure" in a year or so.

      Comment


      • #4
        They are both beautifully written articles... time is money... money equals time to work on this stuff. October 30 12 year anniversary, getting tired of that five-year scenario. Just keep on hoping.
        keiffer66

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        • #5
          I often wonder why there are no TV commericals, asking for donations or anything like that? they sure are enough for breast cancer,ALS,aids,and so on.

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          • #6
            dead on rj jr.

            There should be a national committe formed consisting of a representative from each private SCI foundation to focus our communities efforts and the best way to spend the dollars raised though the various fund raisers that are held each year. There are only so many donated dollars to go around and we should be using them wisely. Do this... a google search of the major foundations, how much they bring in and where it goes, you would be amazed how much money is generated.


            kickingber I often wonder why there are no TV commericals, asking for donations or anything like that? they sure are enough for breast cancer,ALS,aids,and so on.

            yep, one would think the CRF would be doing this

            the PVA had a one going for awhile
            http://justadollarplease.org/

            2010 SCINet Clinical Trial Support Squad Member

            "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

            .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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            • #7
              Totally agree! How do we do it?

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              • #8
                Originally posted by momo3 View Post
                Totally agree! How do we do it?
                I'm working on that. I want to contact the CEO's of several of the larger foundations and discuss my idea. I really think it should be spearheaded by the Christopher and Dana Reeve Foundation due to the fact that they are probably the most recognized SCI foundation by the general public. I think they should be taking more of a lead role in what's going on or not going on in our community and i've thought that for quite a while.

                There should be much more visablity in the media about spinal cord injury via public service announcements and commercials and they should be helping with that.

                I read some where recently that the Reeves children want to be more involved and want to help fullfill their dads legacy and what better way is there than to try and organize the efforts of everyone concerned?

                Wish me luck...

                Comment


                • #9
                  Consider that done, and very much looking forward to hearing
                  1. What you find out.
                  2. How I can help.
                  "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

                  Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
                  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.

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                  • #10
                    Originally posted by rjames View Post
                    Quality of life? what would better for that than to fix this injury or at least give some improvement?
                    Rick James, Sr.
                    RJames,

                    This is a very important point, to much money are wasted for useless attempts to improve the quality of life for SCI people.
                    We have little money, we need to concentrate it in one direction to get someting. The cure is a realistic goal and is the best result we can ask for.

                    Paolo
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                    • #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

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

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                        • #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?

                          Comment


                          • #14
                            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

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                            • #15
                              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, 11:12 AM. Reason: add info.

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