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Member since '11
Paolo
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Paolo
commented on
Team LeGrand
Do you think that with the "Power of We" we can make a cure happen?
Paolo
commented on
Reeve Board Re-ups Consortium; Anderson Lab Comes full Circle
Sadly I have to note that "chronic SCI" has not been even mentioned... I know researchers don't like to have narrow guide lines, but people living with SCI have chronic SCI, which is a very different problem than acute SCI, so we ask for a cure for chronic SCI first. Does that make sense?
Paolo
commented on
Thank you, Katie Sharify
To get an informed consent in acute SCI trials is a real challenge (and in this case you had two weeks of time so it was a bit easier). I wonder how many candidates (about 250 have been screened to get 5 patrecipants) did not partecipate to the trial because of the barrier of the informed consent in such a tragic emotional moment.
I spoke with a principal investigator of an acute trial once and she clearly said that it's a real challenge to get informed consent for an acute trial. She went on saying she would love to do a trial on chronic SCI as (among other advantages) to get an informed consent it's much esier.
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Paolo
commented on
Benefits of Disability
@ Sam Maddox I desagree when you say that Mike’s blog has been wildly misread. In my opinion Mike's blog at best was very misunderstandable and if there is a misunderstanding here it could have been prevented esily. Readers are not to blame in my opinion.
Paolo
commented on
Benefits of Disability
Ok let's say that I am a hard core cure folk, I would never talk or write in a way that may affect negatively civil rights of people with disability, but the problem is that sometimes (or perhaps we could even say very often) like in this case those on the vanguard of civil rights of those with disabilities talk and act in a way that affect negatively the effort of all the people who work to make a cure happen. That for me is outrageous. Mr. Collins could have informed people about these programs that can help people get along better using a very different lenguage. Since what he wrote is affecting negatively the effort of people like me that dedicate a lot of time and money to cure advocacy I have the right to react. As long as CDRF keeps on with this line of communication that is about celebrating life with SCI I will act against that. After all this discussion has been going on for over a year now and being nice and friendly didn't change a thing so let's try plan B now.
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Paolo
commented on
Benefits of Disability
Here is a small part of what this man wrote before he ended his life.
So in this case, truth is valuable in part because many people with spinal cord injuries say the only reason they don’t kill themselves is that they have hope for a cure. Others say it’s because though they hate their lives, they are too frightened to end them. Yet others who are so disabled they would have a hard time even doing it physically have said they are just waiting until assisted suicide is legal. How do I know this? Because they tell me! They say these things! But if everyone thinks being a paraplegic is fine and dandy, there will be no sense of urgency on the part of those who have the power to help us. And this should complete your understanding of the great tragedy I have been explaining. Every time those who desperately hope for a cure hear things like “I’ve never felt disabled” from prominent paraplegics, their hope dies a little because the world needs to know the truth before anything will happen. Our cry is “Help! Help please! Can’t you see that it’s a nightmare? Won’t anybody listen? It’s horrible. Help! Cure us!” But instead of the situation being viewed as the direst of emergencies, we get, “It’s not so bad. Look at that guy. He’s a paraplegic and he’s happy. He plays tennis. You just need to find a way to be happy too.”
Just because I want that to be very clear, I’m going to say it again. Disabled people are compelled to display certain attitudes because doing so helps them satisfy profoundly human, very legitimate needs, like having the love, support, and acceptance of other human beings. But in so doing, they allow the world to view paraplegia, and spinal cord injuries in general, as something other than horrible, unthinkably nightmarish injuries that devastate and profoundly diminish the quality of hundreds of thousands of people’s lives. And when the world does not see the situation as an emergency, it does not respond like it would if it knew the truth. That’s the tragedy, and that’s the reason truth is important and valuable here. And that’s why even though what I’m writing is in many ways terribly unattractive, it is worth ten-thousand times more than all lies in the world.
The link for the book is:http://www.2arms1head.com/
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Paolo
commented on
Benefits of Disability
This article is a great example of how disability can drive people insane. I want to thank CDRF for posting it, so people can use it to easily show the world why many people are not happy with this foundation and other SCI orgs who would agree with this insanity. People with SCI who still have a bit of common sense left NOT ONLY should stop supporting this orgs, but also need to talke action against this insanity as "Our lives begin to end the day we become silent about things that matter." - Martin Lither King
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Paolo
commented on
$20 Million to Stage SCI Cervical Stem Cell Trial
tobym, let us know how it goes. Good luck!
Paolo
commented on
$20 Million to Stage SCI Cervical Stem Cell Trial
In June I attended a one day SCI scientific meeting at Balgrist institute. Dr. Armin Curt presented the data showing few levels of sensory return in 2 of the patients. The neuro surgeon explained the intervention and compared it with what was done by Geron and Neuralstem. As an abserver it looked to me as a brainstorm session with several clinicians and resercers adding their knowledge. I am not surprise there is not much public info out as they are exploring "unknown territories" and it seems a good idea to me to release info carefully. Now they are recruting candidates asia B which is another very big step in my opinion.
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Paolo
commented on
Getting Tired of Waiting
My point is that there is much more that could be done. For example, CDRF should stop celebrating life with SCI, celebrating how people overcome the adversity of life with SCI... CDRF should communicate intensively how life with SCI sucks, therefore a cure is an ugent necessity so more $ & effort would flow toward finding a cure. More & more people get the impression we are all happy to roll around etc... The Push Girls are also giving this message out for what I could see.
Recently I got a lot of support by posting the following on my fb status:
"The International Declaration of Human Rights says: “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”. I think the above fits just right to life with spinal cord injury. A cure for SCI is a human right issue."
Maybe that is a line of communication CDRF can consider.
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Paolo
commented on
Grading Drug Trial Candidates
Did Brian Kwon mention that he believes the way forward in SCI research is on chronic? According to Dr. Freda Miller, Brian has convinced her to refocus her research on chronic SCI because he believes that's the best way forward. See the second part of this talk:
https://www.youtube.com/watch?v=0dKN1_2pDNQ
Paolo
commented on
G-Lab Rat Athletes Restore Voluntary Movement
I think what is crucial here is as you said: " The images and videos are irresistible: the rat girl wears a black vest hooked up to a little crane device overhead; she’s on her hind legs, seeming to thrust herself forward, eyes intent on an unseen treat.." About a year ago I have seen a presentation of this group were they had actually anticipated they were seeing this results... the audience was very excited.. I would say by the nice & clear presentation, the "sexy" images of the scienze and the good looking girl presenting :) I wish that also other labs/lines of research could get the same media attention unfortunatly often scienze it is very difficult to communicated in an attractive way for the mass media. I wonder if you can consider setting up a youtube channel where you explain what's going in SCI cure research with the support of photos, videos etc.. That's more work for sure but perhaps it would get the attention of many more SCI people & media too..
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Paolo
commented on
I-2012 Day Two: Marching Toward Translation
Thanx Sam for this report, looking forward to the next report. I hope there will be some chronic SCI relevant discussion happening at the conference.
Paolo
commented on
New Acute SCI Trial On the Way
That is good so neurosurgeon can do as they believe is better (which will make them happy :) ) with methylprednisolone, but that will add complexity to the study as they will have to analize the data - also - dividing patient who got MP from the ones who didn't so I guess we'll have:
1) patients who get 13837 + MP
2) Patients who get placebo + MP
3) Patients who get just 13837
4) Patients who get just placebo
I hope 13837 will produce strong unquestionable recovery otherwise I can see future endless discussions between clinicians & researchers around 13837... like still happens with methylprednisolone.
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Paolo
commented on
New Acute SCI Trial On the Way
Will the patients in the trial get methylprednisolone?
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