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Thread: A visit to Dr. Keirstead’s lab.

  1. #221
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    hey but....

    could someone here please cut through the bullshit and tell me where we are right now and what does the next annual 5 years bring? I've been denied twice by the " suuuuure, there'll be advances and treatments in 5 years...real soon! What other sorry bastard here has come upon or passed their 10 year mark of neuterdom.

  2. #222
    Senior Member Imight's Avatar
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    Quote Originally Posted by kate View Post
    You're welcome.
    And I wanted to say that everyone who has ever financially supported Geron's work, or Hans Keirstead's work, is due a huge thanks from this community.

    If Geron had not taken the bit in their teeth and invested many millions of dollars in embryonic stem cell research (much of that money going to Hans' lab at UC Irvine), we would be nowhere.

    All the work of developing a safe way to grow esc's into the myelin-making OPCs, all the hassle of dealing with the FDA, all the setbacks, all the documentation, all the politics -- all of that would still be in the future.

    That they took this on in spite of Bush is so important, and imo saved us years.

    I'm talking to you, JenJen ($6,000 all by herself in a marathon last year), and to Karen and Fran ($350,000 over the last ten years) and Don Reed (the Roman Reed bill, which has put $1.5 million into scientists hands every year since 2000) and all the rest of the Californians who led the way. Thank you!

    I think I had put my laptop away on Wednesday by the time Os Steward said this, so it's not on the blog, but it's just so important. Here's the takeway:

    Scientists cannot get funding for research that helps chronics unless they can demonstrate that they're onto something promising. The only way they can do the work that demonstrates they're onto something promising is to spend money. (For example, what do you think it costs to keep and care for injured animals long enough to test therapies on them? $30,000 is one number I heard.)

    So, the money that JenJen and Karen and Fran and Don have been raising for the Reeve Irvine Center for the last several years is what made it possible for the researchers to get enough traction to attract other money, both from the feds and from the state and from the venture capitalists.

    It's a fact that without their initiative and efforts, there might be nothing coming out of those labs, instead of the big news we heard in CA last week.
    Sorry but from what I got. its nothing more than an investment. in other words, I can be a millionaire right now. and be a complete quad since I was 5. my limps are small and I hardly have any muscles. the rewiring I do have is to compensate for the lack of function, and even when the cure comes I will continue to move in that way (at first) until the rewiring is corrected. this can take years of therapy and if you have PPO like I had. you only have 24-60 visits a year, and will only be approved for more if deemed medically nec. would this be? hmmmmm

    well what does this mean for the guy handing over 15 million dollars. well that means that, true, we are closer, and true, clinical trials will be great for those that are acute and have no cns scars, and havent had much rewring and have used their limbs in the last 5 years.

    but what does that mean for me, the millionaire handing out money like rain? not a damn thing, because truth be told, not only will the stem cells have to be approved, they will have to go thru the boards (stem cells dont have cpt codes ahem) then we have to talk about multiple therapies being approved for things like bones, muscular implants, pain managment etc etc. this can take up to 20 years to get something remotely close to anything extremely progressive. keyword. extremely.

    sure my quality of life will improve, heck it does for those that go to germany and get those little increments of gains from injections and tough therapy. but to say we'll be walking (I say we, tho I am, but you know what I mean) is looking not so great.

    did I forget to mention that insurances would also have to approve ALL these therapies? and that there would have to be collaborations between labs, facilities, doctors, etc etc? Which in itself is a task (big up capitalism). How many different doctors do you have, and how long does it take some times to see them? referral here, referral there, over at that hospital across town cause the other doesn't have that speciality- 2 month wait here, 2 month wait there. The U.S healthcare system is complete rubbish.

    I worked for Anthem (Blue Cross) for many many years. Here's what's going to happen, a cure will come, 13,000 of our patients will request etc number of therapies. this will be sent to medical review (our doctors within our company) who work along side actuaries, and then dwell whether the companies will be losing out based on premium cost and 13,000 people seeking surgeries and therapies. If THAT doctor feels it is not worth it or medically nec, half the therapies can be approved and the other half can be denied. then what? you got stem cells but no therapies to assist with strenghtening your limps. oh joy. people call socialism this and that, but this would be the perfect time for socialism to kick in for something like THIS. because private health care, CARE about 3 things. number of members, premiums, and participating network (number of contracting doctors). Balancing these are tricky, and that's where the actuaries come in (company gains $$$). I have a hard time seeing private insurance going good with this.


    For me, it looks very promising. I can see this really working for my benefit, but for some here. this wasn't very hopeful and I don't think I would have even bothered. I'd probably opt the funds to go to sci-step (after stem cells) and work on things like transferring.

    what Im trying to say is the hope of dancing again is looking grime for a lot of people. I just hope most see this as reality and not some magic potion.

    Now this of course is a 'individual' base by base. there are people like John (fuente) whos limps look great, he's been injured for years, the guy works out, he uses his standing frame every day, and his nerves (incomplete) are firing like no other. He has drive, will probably not need many 'procedures' but the key is STAY HEALTHY. that's why when that was mentioned ONLY HALF the room clapped. I found that interesting. there were somem that can not do THAT much, and because of our oh so great healthcare, really are in bad shape. and havent been to therapy in YEARS. havent tried a standing frame in 5 years, and barely have any muscles anywhere.

    This is going to be interesting to see how this unfolds, but I hope these scientists and doctors are prepared to 'hand pick' candidates that will make their process look magical to sell. oh wait they are. acutes.
    Last edited by Imight; 03-15-2009 at 04:30 AM.

  3. #223
    Senior Member Imight's Avatar
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    Quote Originally Posted by betheny View Post
    IMight-Can you define "cure convention" for me? It's kind of my occupation, but I've never heard it called that, or thought of it that way.
    talking about the road to the cure that we've all heard, and what they are 'doing' in the labs, that you can read by a click of google, but without any dates or specifics on how this will transfer on humans and when it will.

    don't have time to sit down and hear shit I've read for nights on ends. YOU LET ME KNOW that the rats time frame took 2 months to gain walking mobility which translates to 9 months in humans and my ears are up like a bunny rabbits. I have not heard such things and I have been keeping a very close eye on this for the past 20 months I have been injured. Sometimes I think people like Dr. Huang, are actually progressive in a way because they are jumping straight to humans and sorting it out from there. Sure, there are complications, humans this and that, risky this and that, but in terms of progression they, in a way, are actually doing a not so bad thing. They are modifying based on their finding on humans already.

    But here It's like they're done with mid terms (whats being done in labs currently). Now, they're presenting unfinished finals to a group at their house being asked about the thesis and finals, where they're going, they tell us, then we go to their house a month later and they tell us the same thing but with a few modifications and adjustments within their outlines and what angles their looking at. NO. you let me know when 'eureka', the paper is done, due, and turn in the paper and let's get this cracking. til then, stay in the labs and let me know when you breakthrough - minor details ...ill read them via articles.

    I'd love to go to a convention where I can ask questions on certain angles they are looking at without getting the deer in head lights look. I'd like to know about BREAKTHROUGHS and say, we have the funds, here's how its going to transfer over and here's when the dates begin. that's the kind of sit down I yearn for. but it seems unlikely this year. who knows maybe next.

    LOL @ Leif
    Last edited by Imight; 03-15-2009 at 04:51 AM.

  4. #224
    Dang, Imight. You have a good point, why even bother? On the other hand, no one
    has treated a recovering chronic complete sci, so who knows how that will work.
    Also, staying in shape doesn't just apply to your limbs. It's as important to keep
    your bladder, kidneys, and so on in shape as well.

  5. #225
    Imight, enjoy your post. We can all agree about the rats and reported breakthrus without any followup. Everytime we hear something about a breakthru; we never hear from the source again. They just seem to disappear to their labs and milk endleesly the system. Thanks for your post; it makes sense to me.

  6. #226
    I really don't think that the best way to get new treatments and cures is to wait for someone to knock on your door and announce that your cure is waiting for you. If you want something. do what it takes to make it happen. Yes, that generally requires work, hard work. Continuing when you are tired, inconvenienced, discouraged, sick and then some.
    There are many labs and rehab centers across the country that would be happy to take you on a tour. Wise's lab as monthly scheduled tours. Saturday I attended Meet the Scientists at the Reeve-Irvine Research Center, which included about an hour and a half of questions and answers, time for individual conversations with scientists, lab tours and a demonstration of BCI (brain computer interface), which was amazing!
    A scientist doesn't know from year to year how much funding he will get, if any. This is our condition. We cannot wait for others to rescue us. If you want information other than what is posted on the internet, go to a research center. Find out what is causing delays. I'd bet that 9 times out of 10 the answer will be money. Want a cure, do your part to raise money for research.

    I have been injured c 3/4 for 17 years. There was no talk of research. The word HOPE was always proceeded by the word FALSE. There were no embryonic stem cells, no rehab for improvement, like gait training, but instead, a teaching of adaptive techniques only, as if the paralyzed areas of your body no longer existed. There were no chronic injury studies. Now, there are many. There is collaberation now - not just between scientists, but with physicians, bioenginers, rehab specialists and patients.
    What many don't realize is that when a discovery is made, funding must come from from private donations, or special funding sources like Californian's Roman Reed SCI Research Act, which provides 1.5 million per year for SCI research and Prop. 71, a $3 billion stem cell research funding bill. These money sources were created by people with medical conditions, their families and friends. These private/special donations are needed because before NIH (the biggest research funding resource in the country) will fund an idea, it must have supporting documentation proving that it is an idea with valuable results. There are undoubtably many, many worthwhile projects (cures, perhaps) that never get funded because there was/is no money to do the necessary first testing. It is all about money.

    Just my two cents...
    Karen M
    C 3/4 inc. central cord
    10/29/1992 - 18 years, but who counts?

  7. #227
    Karen, your 2 cents is = to a million. Sounds like you are one of us lloking to be proactive. Many of us are committed to further progress and are for raising money for the cause. Thanks for your comments.

    T.J.

  8. #228
    Thanks for sharing your perspective Karen.

  9. #229
    Curious with your desire to meet with Kiersted. My unbderstanding is that the treatment he is precribing is for acutes or those who have injuries within 2 weeks before treatment. I'm botheres by the trials and treatment s that have been discussed. All seem to point to an almost immediate treatment. My question continues to be; what treatments will be available for chronics past 3 years of episode. If anybody can answer this question , please do.

  10. #230
    Keeping- The last time I heard Dr. Kiersted speak he was working on chronic therapies and that was a few years ago. Just from information I have read here:

    TCA Cellular Therapies http://www.tcacellulartherapy.com/
    Neural Stem http://www.neuralstem.com/
    SCInetUSA http://www.scinetusa.org/

    Maybe StemCell Inc.? http://www.stemcellsinc.com/
    Stepahead
    Http://www.stepahead.org.au/pages/re.../project-1.php


    These potential trials all seem to be aiming for those with chronic injuries.

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