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Thread: Now what?

  1. #91
    Quote Originally Posted by Mike Honcho View Post
    Wise, thank you. Reading this thread took me back to the days when I was so desperate for good news. I have a much better understanding of the research process now than I did way back when I was still adjusting to being in a chair - OK, I was an idiot :-) - and I must say your very cautious wording and advancing to Phase 3 trials provides more encouragement than I have had in a very long time.

    Again, thank you for all that you do, and all that you have already done for decades. I will be eager to see what the results of these next steps are. Hopefully it will be lots of steps for people who haven't been able to take them for some time.
    Mike,

    Thank you for understanding. I hoped that people would understand the import of the decision that we have made to go ahead with the phase 3 trial. It has been a long haul to reach this stage but I am glad that you understand that this was not a trivial decision. The decision was not easy nor simple. Our alternative was to go to our next generation therapy (i.e. neural stem cells and cethrin) or to commit to the difficult and expensive undertaking of proving that umbilical cord blood mononuclear cells and lithium restores function in people with chronic spinal cord injury. The decision to do the latter means that we have confidence that the treatment will show significant beneficial effects.

    Incidentally, people should not be too hard on Paulo Cipolla for raising questions about the decision because there will be much harsher critics of the decision in the months to come. There are many nihilists who believe that no therapy will work for chronic spinal cord injury or that only their therapy will work. For whatever reason that drives them, they will do everything that they can to undermine the effort to go forward to a trial to test therapies that they don't think will work. Our commitment is to find and test the best therapies, to go forward based on the best available evidence, and to conduct rigorous clinical trials. That is the way it should be.

    Wise.
    Last edited by Wise Young; 06-10-2012 at 03:45 PM.

  2. #92
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    Thank you Dr. Its great to read you understand why some of us tend to be more skeptic about information you provide us with. We have read much about "amazing" therapies in the past and none of them delivered. I think over the years you got to know the community pretty well. You know what cure means to all of us. Some learned to accept the fact that we might never get better. Some, to this day, think about it every passing day. I know in my case ..the days turned into months and months into years. With passing time I became more prone to skepticism. I learned how to recognize snake oil and
    to question ... and when you start to question it is more difficult...... to believe.

    That being said. I have questions... How do you think this therapy will affect those that need it the most? Complete high injuries, people that have to use machines to breath. On the contrary how it might effect people with incomplete injuries .. those that can walk using accessories. Will it help get people off vents... will it help those incomplete injuries get more back?? I am afraid that those that dont need it as much will benefit the most and those that need it the most will hardly see any improvements.

    Also, you say that you are not sure if the "walking" part is based on cocktail plus surgery/rehab or only the surgery/rehab. Does that mean that some might benefit from just surgery? How can a patient not take advantage of the fact that they have the potential of walking just to find out about it taking part in experimental trial? This does not make sense to me since I know thats all we can think about first few years.

    Last but not least. What was the deciding factor (what convinced your team) to go ahead with 3ed phase trials? And, when can we see some data to review?

    Thank you in advance. Regards, Bart.
    Last edited by BSgimp; 06-11-2012 at 12:38 AM.

  3. #93
    bart, excellent post.

    anthony

  4. #94
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    Next step. Reading over the 2010 and 2011 w2w reports the next step seems obvious.Here's Mark Smith "What if we could form an organization that included all of us. That didn't require a certain cause of paralysis to get in the door?" He went on to point out that now there are a hundred times more people with paralysis than had polio in 1952. And "We are looking for cues for a human condition (called paralysis."
    Here's Wise "for the first time I feel like this group is THE advocacy group...The time will come when there will be thousands of people attending".
    J. Silver "Bombard Accorda with a continuous stream of letters."
    Here's Kate "when Wise put this site together, he thought it would be a natural step for the community to organize and work for the cure."
    We need an umbrella organization that can bring muscle (money, votes, outcry) to advocacy.
    And the core is in place. Here's Silver "u2fp is positioned to really get traction. We-the SCI community through the efforts at u2fp have the attention of people who can help us, and we're in a position to ramp it up to another order of magnitude,"
    u2fp can and should transform itself. We know it can do it because we know the amazing things it has done with a small group (7 member board) with only one getting paid (a pittance).
    It needs a paid professional staff. The seed money would come from a dues paying membership-recommended fee $100/yr but minimum of $20. The present board can do the math. How many of the 500,000 SCI would we need? CC members alone could provide the planning funds.
    One of the Wise Youngs (we know that there are at least six of them) could provide advice. But we want to free Wise from the endless task of explaining that temporal sequence does not =efficacy which means demonstrable, visible, duplicatable
    evidence of causality.
    This can be done-lets do it.
    And t hanks to all of the Wise Youngs-they can't all be as patient as the one who regularly shows up here.
    Finbar

  5. #95

  6. #96
    finbar ,we are certainly thinking outside the box and putting focus on a cure for all of us.

    thank you

    anthony

  7. #97
    Creating a new organization based on wheeler advocacy will take a lot of time and money. It will be years before it had the needed credibility with researchers and governmental agencies.

    If you're interested in going forward, far better to choose an organization with standing and impartiality and aligning with them. Take the advantage of numbers and reshape their mission to better suit us.

    Why reinvent the wheel when you can just balance it?
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  8. #98
    Moderator jody's Avatar
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    I want to get on with this cure thing. no more 3-5 or 5-10, no more waiting!

  9. #99
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    JenJen,
    Fine. Propose the organization and if we agree lets go with it. u2fpr is right here. It came out of CC. It has done a lot to establish its credibility with a lot of CC members.I cited some powerful endorsements-better informed than me. I simply pulled out what looked like a strong consensus among a lot of members. As far as credibility with researchers and agencies what we need is political clout, money, votes, letters etc. u2fp had enough clout to get the fda to send a rep and to get top
    researchers to come and,like Silver, ask us to do something. Also the established organizations were built before the whole social media revolution. Are we sure we
    couldn't do things now that couldn't be done 10 years ago? This is a real question. There are people who make their living doing it. Can we hire them? And again, what would we bring to an established organization that would entice them to bring us aboard?
    Look, I have no personal steak in u2fp. It's here and it looks impressive. But why not put other options on the table-give them the consideration they merit-and make a decision. In any emergency the real options are finite-lets move. And lets hear from
    u2fp. I didn't consult them before posting this. I don't know them. Maybe they are tired and this is too ambitious. Let's bring the thread to closure. Too many simply die. We can't be hypnotized by infinite possibilities.
    Finbar

  10. #100
    Policy campaigns are part of what I do. I promise you "we" cannot afford the consultants you're thinking of.

    What do we bring to an organization? Buy-in, additional credibility, energy, resources, our stories...

    I personally love U2FP. Marilyn, et al. have moved mountains with few resources. I'll be attending W2W health and finances allowing. They are a vital part of this movement but there's room for several viable organizations. I believe this is a symphony not a solo act.

    I have become fascinated with the idea of re-spinning CDRF for a number of reasons:

    1. They have international name recognition. Talk to the average person and they'll know Reeve but not the other organizations.
    2. They have an existing structure
    3. They have researcher-bait: FUNDS!
    4. It is my personal opinion that there is no one better informed on the global level of the state of research than some of the leaders at Reeve. Truly, they are invited into labs you and I have not even heard of. They see the research and the proposals. They have a peer-review process to weed out the projects that are surviving on researcher charisma and snake-oil. They speak to every legitimate researcher in the field so they hear all the pros and cons that we'll never be privy to.

    That said, there is plenty of room for every organization. U2FP could be THE one but there would be a LOT of growing to do in very little time. Again, why re-invent the wheel?
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

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