25 December 2013

Is CDRF listening? Maybe, just maybe, they are.

SCI won't be cured by hyped up language but by science and the active involvement of those living with the horrors of paralysis and their supporters.

In November, I wrote an email to Mr. Peter Wilderotter the CEO of the Christopher and Dana Reeve Foundation (CDRF) in regards to a hyped up fundraising email which claimed that CDRF was, “Successfully getting people out of wheelchairs right now. Today, it really is a reality.

Now, I don’t know about you, but when I hear statements like this it sounds like people are getting out of wheelchairs for good. A look through the research and what I find is that while it is helping people improve balance and even some ambulation; these same people are still using wheelchairs. Unless you try to be literal about it, this is not, “getting people out of wheelchairs,” in the way that most regular people would understand it.

I don’t like claims like this because they spread false hope especially amongst the newly injured and I told this to Mr. Wilderotter. I asked for an apology, but I think I got something much better. Looking at their next fundraising email, there was a fundamental difference in tone.

I’m heartened by the fact that maybe foundations do listen a little (after three years of campaigns aimed against this kind of behaviour).

This time, instead of making such broad sweeping statements that have no educational value whatsoever, Mr. Wilderotter listed three things that CDRF is working on which he thinks is important to both care and the future of cure. I would have liked some links in the email so people can see exactly what he’s talking about, but it’s a lot better than saying, “getting people out of wheelchairs right now,” without explaining the whole story.

To tell you the truth, I actually disagree with the importance of some of the three things Mr. Wilderotter raised, but guess what, I don’t mind disagreement. They don’t have to agree with me and I don’t have to agree with them. What I wrote to Mr. Wilderotter about was not disagreement over the statement, “Successfully getting people out of wheelchairs,” but that this statement is misleading, spreads false hope and miseducation, and makes people think that cure is much closer than it actually is. In the end, their message said, don’t worry about getting involved in cure, send us money and we’ll deal with it as we’re already getting people out of their chairs.

This is the wrong message. I hope CDRF does more in the future to involve those of us in chairs because I think it will help us all get closer to cure, but in the meantime, I’m happy that we MAY have sent CDRF a strong statement against wild comments that do nothing to bring us closer to cure.


Thank you Mr. Wilderotter (and I really do mean this).

PS. I spent some time this morning removing Bob's accusatory comments and the responses that others have made because they are pissed off with Bob's unending off topic comments about Dr. Wise Young.
From now on, false and/or off topic comments won't be allowed and this will stop the mean comments against Bob and his son (who doesn't have anything to do with this).

I understand that this is an emotional topic, but it gives no one, not even Bob, the right to make statements that they cannot back up.

35 comments:

  1. It really is amazing that you can say that Dennis, and ignore the "people are walking" statement by Dr Young

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    2. Poor Boob. Why can't he ignore the statement about people walking? He comes here to screech about it all the time. Nobody else gives a shit about it so why would anyone blog about hearsay?

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  3. I wonder more how long can dennis remain silent about dr wise

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    1. So a researcher has made a claim about walking, in the end there will be a paper and if he's lying, it will come out then. How can Dennis go after this researcher without the proof that only this researcher will have?
      Please answer the question:
      What exactly do you want to go after this researcher about and how do you intend to prove it? Is it this trial? Is it something in the past? What exactly are you talking about?

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    2. The claims were made premature

      Thats not how its supposed to be done

      Its called science by press conference and is why the US press snubbed his press release

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    3. So what? If in the end the results are as good as he says, people will eat a lot of the blackest crow they've ever eaten. I'm sure Dennis isn't interested in that menu.
      If the results aren't as good as what he states and is infact lying, that will come out in time, but no one can prove that at this moment. Do you have the proof?
      Therefore how does your campaign idea about the 'science by press conference work'? What are the mechanics? What is the demand? Who is it aimed at? Is it undercover reporting? What's the game plan?
      And here's the big one and I really want an answer to this one. Why don't YOU do it? It just takes a blogger site and free online petition sites.
      You can call it the Bob vs Wise Cage Match.

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    4. It's already been blogged by Sam Maddox on CDRF

      Are you suggesting over hyping or lying about results is OK? That's a big waste of money and puts a real cure further away.

      Putting out a sensational press release before experts in your field have had a chance to evaluate your scientific work is bad for science and bad for society - See more at: http://scopeblog.stanford.edu/2013/10/28/the-disturbing-trend-of-science-by-press-release/#sthash.K7GCdt40.dpuf



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    5. So why don't the people who want it done go ahead and do it? Why waste time trying to convince Dennis to do it? Isn't time of the essence in this case.

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    6. "Are you suggesting over hyping or lying about results is OK? That's a big waste of money and puts a real cure further away."

      Who is suggesting this and WHAT PROOF DO YOU HAVE that the results are being over hyped or lied about? Here's your big chance Bob. Here's your chance to use this blog to tell the world your proof that the results are being lied about. You won't even need to sign up to your own free blogger site (10 seconds) saved.
      Let's face facts. If you had the proof that the announcement was overhyped or lied about you would have already announced it. You have no facts. You're trying to replace facts by repeating over and over that Wise lying. Your a one man rumour mill, but rumours don't work that way.
      Come on Bob and your Bobettes, give us the proof it you got it.

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    7. If you believe the great results of chinaSCI net, why don't you show them to doctors in Japan? If 75% of people recoverd walking docs in Japan should get excited and do what it takes to start a clinical trial in japan too.

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    8. Imagine Dennis is telling "Bob" he has no proof and should stop making claims against Wise, wow
      Where is the proof that the treatment works?
      Where has it been published?
      Where has it been reviewed? or replicated?
      The same situation took place with methylprednisolone early unpublished announcements rushed the acute treatment to a standard of care only years later did we find out it doesn't work. Perhaps thats why his press release about doctors can no longer say you will never walk again never made it in western countries.

      Dennis, the burden of proof is on Wise!
      No matter how he tries to circumvent that!

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    9. Dennis
      Why don't you ask an expert? Art Caplan a well known bio-ethicist responds to emails

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    10. Arthur.Caplan@nyumc.org

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    11. So why don't yous who think that something should be done, do something instead of complaining to Dennis that he isn't doing anything. Yours arguments are clear in yours minds so go get them. It appears that yous even know an ethicist, so by all means use the information he will give yous.
      WHAT DOES ANY OF THIS HAVE TO DO WITH EVERY POST DENNIS MAKES?Even when Dennis says he's in the hospital with a pressure sore, Pob says it's because he doesn't attack Wise.
      If Pob has the info HES should go ahead.
      I'll ask Pob the same question hes' been asked over and over and over and has never had the courage to answer.
      IF YOU THINK WISE IS A PROBLEM, WHY DON'T YOUS ORGANIZE SOMETHING TO DEAL WITH IT?
      Pob has no support in the community and the best way to deal with hims is to ban him from this site just like hes' been banned from other sites.

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    12. The problem is Bob's laziness. He wants everyone else to do his dirty work for him. It's called being a "chicken shit".

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    13. It's hysterical a goon ball posts a Caplan email here and can't poke a few keystrokes to even send their own email? How lazy and lame is that one? BHAAAAAAAAAAAAA!

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  4. CDRF is not listening to you, is just playing as they have been doing since the beginning with all people questioning them. Join SCS if you really want to cure SCI

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  7. I think we should sponsor Dennis so that he can go to China and blog his recovery. That would be a great service to the SCI community. Dennis would you be interested?

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    2. Why does Troller Bob report his carecure stalking at an unrelated comment section?

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  9. "Come on Bob and your Bobettes, give us the proof it you got it"

    Dennis the burden of proof is on Wise

    A treatment isn't supposed to be assumed as beneficial unless otherWISE proved

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  10. If the burden of proof is on Wise, why ask Dennis about it.
    Denis would get people to write Wise directly and ask for an explanation and if he wasn't satisfied would do it again and again. He wouldn't write to Bob about the problem if the problem was Wise.
    go out there and get people together to deal with the isssue.
    What are all the bobs waiting for and wasting their time writing to denis.

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  11. If SCS thinks they're hot shit, why did they spend all that money on a BUILDING instead of research. You're as bad as any other....

    You didn't change their messaging, there are nuances to the appeals campaign. You did diddly-squat.

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    1. Who is this comment aimed at?
      It's incomprehensible. Is "you" Dennis?
      What does, "there are nuances to the appeals campaign," mean?

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    2. The troller doesn't know. The Spinal Cord Society didn't put up a building. That's diddly-squat straight from troller nuance play book and an appeal to post silliness.

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