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Paraplegic backing for stem cell trials in New Zealand

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  • #31
    klj, It is not easy to change government policy in the U.S. It requires tons of advocacy work to get anything done. Lots of calls, lots of letters, lots of publicity and concurance from a huge amount of people. Some of it depends on which branch of our government we are asking for changes. Local, state, national...many factors also play in to any changes that are necessary. Local issues are the easiest and the difficulty rises up from there according to population. Some branches are much easier and receptive to change than others but various things can be accomplished with perserverance.

    Yes, I've read the various articles on carecure and other sites that's been posted concerning the care vs. cure issues.
    Last edited by GRAMMY; 01-25-2011, 06:53 AM.
    http://spinalcordresearchandadvocacy.wordpress.com/

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    • #32
      Grammy, remember that Sen Harkin was turned as soon as his nephew was paralyzed. Exposure to the people in ocngress will prevail. Make no mistake about it, many,MANY, in congress feel our pain to some degree. With successful treatment from Geron or Wise or others will only increse the publicity and the willing ness to do something. It's our job to stay on task and act as one in seeking action.
      Have a great day.

      keeping on

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      • #33
        Thanks Keeping On. I'll check into that sometime.
        I was able to pull up just a little information here.
        Hopefully it's not too boring for you, but some have
        been at this party for a little while.

        https://www.carecure.net/forum/showthread.php?t=88308
        Last edited by GRAMMY; 01-25-2011, 04:23 PM.
        http://spinalcordresearchandadvocacy.wordpress.com/

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        • #34
          Thanks grammy, I knew we could count on you.

          keeping on

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          • #35
            So, which member of Congress needs contacted this time and for the passage of what bill?
            Last edited by GRAMMY; 01-25-2011, 05:28 PM.
            http://spinalcordresearchandadvocacy.wordpress.com/

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            • #36
              Grammy, I tougt you were concerned about New Zealand and teir work. You can contact Sen Harkin and give your opinion onstem cell funding from the gov't. You can contact New Zealand and give your opinion on stem research for a cure or contonuing on making lives more comfortable and leaving tings the way they are. Don't italicize and red letter your comments; you might scare them.

              go get em for the group.
              keeping on

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              • #37
                I'll organize a general generic request for funding stem cell research in case a bill might be brought to the US House or Senate floor in the future sometime. You also want this generic sent to New Zealand?

                I'll try very hard not to scare my congressman. (They've never been too fearful of me in the past, including Tom Harkin and Harry Reid). I didn't italicize and red letter anything, I just sent graphic pictures and they stomached that well.

                Did you read the link in post #33? Info in that thread may help you to not reinvent the wheel. This was all accomplished by members supporting the passage of CDRPA. SCI efforts are not a new game in town. It may be helpful to know some history of battles already organized and won by carecure members efforts that precede you. (Nobody worried about frightening a congressman off, it was our goal to shock and scare the shit out of them.) No hard fought political battle is pretty nor for the meek at heart. The carecure members here were relentless and for good reasons. The CDRPA was passed with a monumentous effort by members long before your arrival and hundreds if not thousands have the battle scars to prove it. Best of luck to you!

                https://www.carecure.net/forum/showthread.php?t=88308

                https://www.carecure.net/forum/showt...78#post1261278

                All my best to the New Zealanders and their clinical trial!!!! Hats off to Frank Pennington and the Spinal Cord Society
                Last edited by GRAMMY; 01-26-2011, 02:56 AM.
                http://spinalcordresearchandadvocacy.wordpress.com/

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                • #38
                  Originally posted by klj View Post
                  Isn't all research "patient driven"? The lady who started the NZ SCS here did so after her husband was injured, he died several years ago & is still determined to help in a cure way not care. Whether or not this trial will be successful, who knows, it's a comprehension trial having both surgical & non-surgical sci's complete the same physio programmes etc which Lima's study was missing. And a major criticism of Lima's was there was no follow up etc. I'm not exactly sure if it is the same Dr Lima's, an exact replica, but it is based on the olfactory cells...
                  This video has the former head of the Spinal Units - a rehabilitation doctor - I was talking of earlier & is tied in with another spinal cord injury charity in NZ.
                  Hi klj,

                  Thanks for the reply. By patient driven – in general (nothing to do with New Zealand as such and I should have clarified that in my original post) – I was suggesting that it isn’t always of the best if the patients/users are the most significant bit in the decision making puzzle processes, by this I mean the patients/users for the most are laymen and thus if getting to much weight in the decision processes it isn’t necessarily a good thing. One like to think so, but if different pressure groups consisting of only laymen are getting the upper hand – especially over weak research communities and research groups – it could result in research directions which benefits no one and in fact could be a detour in the long run. This debate is quite common in some countries, like how much impact should patient driven research have versus professional science and clinical based. We all know how easy it is for most patients/users to jump onto this or that bandwagon without not necessarily having studied the stand and direction enough, but due to their weight say by many members in some pressure groups, this could in fact result in directions none benefit from, like driving money from one important basic research direction to a not so important research direction, all within the same discipline, like for example SCI research. Thus I would very much like to get rid of the patient and user denomination and more position us and view us as collaborating partners, collaborating partners in the important collaborating triangle, like I like to view it; where we, the scientists and the clinicians can collaborate. I believe this is a good strategy, a good route to work for and that it is key for moving faster ahead. By this close collaborating as equal partners in long-term collaborating partnerships I believe we all can reach our goals, which are common, faster. Like for example; by such an approach the clinicians and us can discuss issues with the scientists on issues we lack the knowledge on, like basic research and research in general, -and by this the scientists and us can discuss issues with the clinicians we lack knowledge on, like how to orchestrate clinical trials on humans, - and by this the scientists and the clinicians can discuss issues with us on issues they lack the knowledge on, like how is the willingness say to participate by you’re members in clinical trials etc. Then, and that is very important, as I see it, -by forming such a triangle of collaborating, we as a group could/would cower all the aspects as for a discipline, like for example SCI. Also, by such an approach, we as a united collaborating group, consisting of us, the scientists and the clinician’s could/would have tremendous impact say on lawmakers, politicians in general, the media, future research strategies, hospital organization management, funding to the field/discipline and so on and so on. It requires some long-term work and stamina to have this, but it is doable. And if all countries within each country could work for such a model I also believe that collaboration with abroad groups could be easier, even more fruitful and effective. And most important, if us, all involved in spinal cord therapies, did that, we could lift the awareness of SCI and the requirements for therapies on the political agenda where it belongs. Just some thoughts from me, and again this is in general, noting to do with New Zealand, which btw I am in no position to take a stand on since I am not in a position to judge/comment on due to lack of knowledge.

                  But many thanks for you’re comments on the New Zealand work. I have a question though, -but first; you might be very right on you’re comments above, but as I understood, the trial application was rejected by a ethical committee I think it was 10 times before the Ok was given. Nothing wrong with that – it probably shows that great considerations was given hence such studies are on humans and we all like to make sure that such are safe for the subjects – but could you shed some light, if possible, why the ethical committee rejected the study the previous times it was applied for?

                  Thanks upfront, and good luck on the important SCI work in New Zealand.

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                  • #39
                    Grammy, I and I assume others have sent e-mails to Harkin. didn't send any to Reid. Do you know what he has to do with spinal reaearch? How do you see the efforts of Obama to change the current position of the Dickey Ammendment and what will happen to fund the spinal reserch efforts thru NIH? Thanks in advance.

                    keeping on

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                    • #41
                      Thanks , but you could answer the question.

                      keeping on

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                      • #42
                        Perhaps I could, however it would be more beneficial to you to learn from researching a subject rather than me spoon feeding you simple one line sentences. Sorry to have disappointed you.
                        http://spinalcordresearchandadvocacy.wordpress.com/

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                        • #43
                          Grammy, yes you are a disappointment. You can say what you profess to know. It would be valuable to the cure thread. On the other hand if you don't know just say so or we will take it as such. Infact don't bother, then it might inconvience you.

                          Have a great day.

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                          • #44
                            Keeping on,

                            I apologize for not living up to your expectations.

                            I've already inconvenienced myself enough to provide you with links to very important discussions and viewpoints from good knowledgable members here on carecure that have been covered. Most have far superior knowledge than I could ever hope to have. This is why I wasted my time to provide them for you.

                            Your questions about our politicians assistance, NIH funding and the Dickey Amendment are all in the links to reference even though it appears you do not wish to learn anything by taking just a little bit of time to read through the information and process your thoughts or gain any knowledge from any of it.

                            It's never been my intention to spoon feed you or anyone else important information, nor have I professed to have superior insights.

                            Dr. Young already answered these very questions earlier in your "politics of stem cell research thread". Why keep posting the very same questions again in here and clutter redundant postings in yet another thread? He gave you excellent explanations already.
                            https://www.carecure.net/forum/showthread.php?t=146748

                            (Your total lack of interest in learning anything that's been posted here is what I find a big disappointment!)
                            Last edited by GRAMMY; 01-27-2011, 02:21 PM.
                            http://spinalcordresearchandadvocacy.wordpress.com/

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                            • #45
                              Originally posted by GRAMMY View Post
                              (Your total lack of interest in learning anything that's been posted here is what I find a big disappointment!)
                              It's highly annoying, too.

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