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Thread: Live from Working 2 Walk 2011!

  1. #131
    Quote Originally Posted by lynnifer View Post
    Thanks Paolo re FDA .. I'll have to go back and read more thoroughly as I just skimmed it quickly this morning.

    Cortine = french accent hotness that is certainly packing below the waist (oh gosh I'm so sorry for being rude ... not really, lol).

    Paolo it's difficult to look at the five (now) people that have had the stim experience and not get excited or hopeful. What is your fear? That other biological attempts at regeneration will cease?

    I was sorry that Jerry Silver didn't have an update ... I assume that is why he wasn't there this year.

    Funny to read the old stuff from above in 2011 and see Dr Davies mentioned. He dropped off of the radar quite fast! I always found it funny that he wore a huge belt buckle like a real Texan ... and he left 'town' like a real cowboy with a bounty on his head. Wonder where he is and what he is doing now?

    Eye on the Prize: https://www.youtube.com/watch?v=mp8w...WChvNfCJqOXct1
    I have been following the epistim approach since well before it become a hot topic since I have a friend researcher who was involved in it. I am convinced that this approach will get nowhere.
    Do you remember when the FES was a hot topic and people believed it would induce plasticity and also some regeneration?
    I think epistim will follow a similar path while it is a more complex technology.
    I don't want you to believe me, I want trials to go on and show if it can really benefit people or not.
    I am sure it will not, so I see a lot of money wasted in a dead end direction, but at the same time I see that as a necessary step to move forward, sadly.
    In God we trust; all others bring data. - Edwards Deming

  2. #132
    Lynnifer and Paolo, I just returned home from W2W 2015. Somewhat disappointed in the lack of progress and same conversation from previous meetings with Dr Dietrich. His response as to why they focus on acute was "they go with what is funded". There were some other opinions on that. Lyn Jakeman of NIH seemed to disagree. She can be contacted directly with other questions. The reps from FDA that were in attendance didn't have much info on funding acute vs chronic, they were from the Patient Network group.

    I hope you are wrong on Dr Ahlfors, if you were sitting in the room watching the video of his 4 patients it was difficult not to be hopeful. Yes, he is new in the public arena and may be a bit rough around the edges but from what I hear he has been working successfully with neural stem cells somewhat "underground". He and New World Labs are certainly what I will be closely watching after this symposium.

  3. #133
    Quote Originally Posted by SharonD View Post
    Lynnifer and Paolo, I just returned home from W2W 2015. Somewhat disappointed in the lack of progress and same conversation from previous meetings with Dr Dietrich. His response as to why they focus on acute was "they go with what is funded". There were some other opinions on that. Lyn Jakeman of NIH seemed to disagree. She can be contacted directly with other questions. The reps from FDA that were in attendance didn't have much info on funding acute vs chronic, they were from the Patient Network group.

    I hope you are wrong on Dr Ahlfors, if you were sitting in the room watching the video of his 4 patients it was difficult not to be hopeful. Yes, he is new in the public arena and may be a bit rough around the edges but from what I hear he has been working successfully with neural stem cells somewhat "underground". He and New World Labs are certainly what I will be closely watching after this symposium.
    Thanks for reporting Sharon.
    I believe that to have a constant dialogue with the NIH and FDA is essential and that to have one person from the NIH and one from FDA at W2W was a great start (finally - and I hope it will not be just a start).

    I too hope to be wrong about Ahlfors.
    I don't have any particular info about his work, but his sicret attitude is not promising to me. He came here on CC and never answered a question about his research, animal studies etc. ...but asked for money
    I have seen that happening several times in the last 10 years and not a single time it turned out to be something good for us.
    If I were not skeptical I would be naive, while I understand some people get very excited about J.E. Ahlfors also because it seems there was nothing else to get excited about at W2W this year.
    Sorry I forgot Courtine
    In God we trust; all others bring data. - Edwards Deming

  4. #134
    Some horses have been beaten for years. The e-stim goes way back to Petrofski and Nan Davis. Body stocking first then implanted electrodes at Wright State. The equipment has improved immensely. Wave forms and frequencies are more effective. Will it cure? NO. It might however end up a good adjunct therapy. Still a frustratingly long time.
    Quote Originally Posted by paolocipolla View Post
    I have been following the epistim approach since well before it become a hot topic since I have a friend researcher who was involved in it. I am convinced that this approach will get nowhere.
    Do you remember when the FES was a hot topic and people believed it would induce plasticity and also some regeneration?
    I think epistim will follow a similar path while it is a more complex technology.
    I don't want you to believe me, I want trials to go on and show if it can really benefit people or not.
    I am sure it will not, so I see a lot of money wasted in a dead end direction, but at the same time I see that as a necessary step to move forward, sadly.

  5. #135
    Quote Originally Posted by lynnifer View Post
    I was sorry that Jerry Silver didn't have an update ... I assume that is why he wasn't there this year.
    No, Jerry wasn't invited to speak this year. I so wish we could have more speakers but there's simply not time to cram in any more speakers during the symposium. I think people that are attending and working with the scientists, funders, other foundations and government officials simply cannot handle any more of the load. They are exhausted after 2 jam packed days which I think all of the SCI participants will agree with. People can only handle just so much. If we had a larger active SCI population that could work the information effectively then an additional day could be added but the community is just too small to handle the extra work load it develops into.

    Quote Originally Posted by paolocipolla View Post
    I believe that to have a constant dialogue with the NIH and FDA is essential and that to have one person from the NIH and one from FDA at W2W was a great start (finally - and I hope it will not be just a start)...
    Actually, the NIH, FDA, DOD, Sam Schmidt and Nielsen Foundation have all been at W2W giving presentations and engaged with the W2W participants over the past 10 years. It's not a new phenomena or first time appearance for any of them. Many of them send teams of people into the conference to help engage and work together. Not everyone working on cure or SCI projects come to this forum to report their activities to you. (You'll never tell us what you have the government in Italy doing for us but we sure do wonder about the ongoing silence every time you're asked).

    Quote Originally Posted by Nowhere Man View Post
    It seems like bad taste and in a way, cruel, for U2FP to invite guest speakers to come and present about acute therapies that are 100% irrelevant to the audience. Especially when most of the SCI audience can't comprehend that these acute therapies will not work on them.
    U2FP is Unite 2 Fight Paralysis. There are more suffering the ravages of paralysis than just what you perceive as chronic mechanical SCIs. Ask people like Sharon, Lynnifer, Dennis, TBone, Sue, Bill, Amy, Roger... Acute therapy potentials are very relevant to their paralysis and they do know that... Their suffering is every bit as real as yours is.

    Total complete B.S. Nowhere Man! It's not bad taste or cruel. ​The blog article missed a specific chronic point... (As Kate said, Dr. Dietrich speaks fast and covers a lot of ground quickly). People on this forum for years demanded that the Miami Project put together a chronic clinical trial. There's been dozen's of threads about it here on carecure. Miami Project came to present their stem cell research, ongoing clinical trials, new initiatives and announced the recruitment of their first new "chronic" trial. LINK (In fact, Paolo publicly demanded this 4 years ago and got exactly what he wanted from Miami Project). MP will have a new website up and running in a few weeks also. If it's in poor taste, or cruel, then perhaps it's best to take that discussion up with someone like Paolo. The way I see it, Dr. Dietrich gave him what he'd demanded. He won the CT for chronic humans getting MP Schwann cells. Hopefully he sees the progress now instead of whining about wasted money, dead end directions and nothing good happening for him. You may disagree with what he wanted or what he got, but the progress at MP has been presented to the paralysis community nonetheless.

    Quote Originally Posted by paolocipolla View Post
    Then if you consider an org like the Miami Project, for example, the situation it is worse than I could imagine. Prof. Dalton Dietrich confirmed me at W2W (after my public question – I hope a video will be available) that they are not working at all on chronic SCI. I think this is totally crazy as the Miami project was created by a person with chronic SCI essentially to cure chronic SCI, I believe. So if we want to make a cure happen for chronic SCI we need a revolution, we need to take the bull by the horns, we need to have 95% of SCI research focusing on chronic SCI, not acute.

    I cure for chronic SCI seems very possible to me, but it will never happen if we study just acute SCI.
    I am dicouraged by the fact that acute vs chronics has been dicussed many times before here on CC. Years are gone and no-thing has really changed.

    Occupy the Miami Project!
    http://www.youtube.com/watch?feature...v=FOzjkzwsU2M#!

    Paolo
    Quote Originally Posted by paolocipolla View Post
    Is this progress?
    You tell us.

    Quote Originally Posted by c473s View Post
    Why we gripe about the efforts of others is something I don't understand.
    I suppose it depends on the effort.
    Last edited by GRAMMY; 10-01-2015 at 08:43 AM.

  6. #136
    Quote Originally Posted by GRAMMY View Post

    .....

    Actually, the NIH, FDA, DOD, Sam Schmidt and Nielsen Foundation have all been at W2W giving presentations and engaged with the W2W participants over the past 10 years. It's not a new phenomena or first time appearance for any of them. Many of them send teams of people into the conference to help engage and work together....

    For some reason there is a mistake in your post above when you quote what I wrote, not sure where "is not promising to me." comes from, I didn't write that.

    I am not sure why you mention DOD, Sam Schmidt and Nielsen Foundation in this answer..
    It is true that the NIH and FDA have presented before at W2W, but I am not sure there has been a constant dialogue with them, in fact it seems the NIH has cut funding for SCI research of 15% and that I know no one said a word about it . To have both the NIH and the FDA at the same time I believe it was great, now I hope SCI people/U2FP/GUSU to Cure etc.. will stay engaged with them constantly and not just waith to hear their presentation at W2W next year.


    ....Paolo publicly demanded this 4 years ago and he got exactly what he wanted from Miami Project. (MP will have a new website up and running in a few weeks also). If it's in poor taste, or cruel, then perhaps it's best to take that discussion up with Paolo. The way I see it, Dr. Dietrich gave him what he'd demanded. Paolo won a CT for chronic humans with MP Schwann cells!! Hopefully he sees the progress now instead of whining about wasted money, dead end directions and nothing good happening for him and lack of progress.

    I didn't get what I wanted from the Miamy Project, probably it wasn't clear to you what I wanted.


    .....
    See my answers in bolt.
    In God we trust; all others bring data. - Edwards Deming

  7. #137
    Quote Originally Posted by paolocipolla View Post
    See my answers in bolt.
    See mine. (You'll never tell us what you have the government in Italy doing for us but we sure do wonder about the ongoing silence every time you're asked)...

  8. #138
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    Quote Originally Posted by GRAMMY View Post
    See mine. (You'll never tell us what you have the government in Italy doing for us but we sure do wonder about the ongoing silence every time you're asked)...
    If an Italian citizen's efforts are best used by telling American citizens how to address the American government then Italians better spend more time focussing on Italian problems. Unless they just like to pee into the wind.

  9. #139
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by GRAMMY View Post
    No, Jerry wasn't invited to speak this year. I wish we could have more speakers but there's simply not time to cram in any more speakers during the symposium. I think people that are attending and working with the scientists, funders, other foundations and government officials simply cannot handle any more of the load. They are exhausted after 2 jam packed days which I think all of the SCI participants will agree with. People can only handle just so much.



    Actually, the NIH, FDA, DOD, Sam Schmidt and Nielsen Foundation have all been at W2W giving presentations and engaged with the W2W participants over the past 10 years. It's not a new phenomena or first time appearance for any of them. Many of them send teams of people into the conference to help engage and work together. Not everyone working on cure or SCI projects come to this forum to report their activities to you. (You'll never tell us what you have the government in Italy doing for us but we sure do wonder about the ongoing silence every time you're asked).



    Total complete B.S. Nowhere Man! It's not bad taste or cruel. ​The blog article missed the specific chronic point. (As Kate said, Dr. Dietrich speaks fast and covers a lot of ground quickly). People on this forum for years demanded that the Miami Project put together a chronic clinical trial. There's been dozen's of threads about it here on carecure. Miami Project came to present their stem cell research, ongoing clinical trials, new initiatives and to announce the recruitment of their first new "chronic" trial. LINK Paolo publicly demanded this 4 years ago and he got exactly what he wanted from Miami Project. (MP will have a new website up and running in a few weeks also). If it's in poor taste, or cruel, then perhaps it's best to take that discussion up with Paolo. The way I see it, Dr. Dietrich gave him what he'd demanded. Paolo won the CT for chronic humans for MP Schwann cells. Hopefully he sees the progress now instead of whining about wasted money, dead end directions and nothing good happening for him and lack of progress. You may disagree with what he wanted or what he got, but it is what it is.





    You tell us.



    I suppose it depends on the effort.

    You say that the miami project will have a new site up and running in a few weeks. Nice. Thank you
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  10. #140
    Quote Originally Posted by lunasicc42 View Post
    You say that the miami project will have a new site up and running in a few weeks. Nice. Thank you
    We saw the preliminary site pages. It looks to be quite an improvement over the current one.

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