23 November 2012

One click to stop the NONSENSE and stand up for paralysis CURE

I want you to take one second to stand up for paralysis cure and send a message to the CEO of the Christopher and Dana Reeve Foundation (CDRF) and tell him that you share my outrage. Please read on.

Despite what a majority of us feel is a living hell, there are apparently many benefits to paralyzed life; that is according to Michael Collins who wrote the article "The benefits of disability" on the CDRF website.

Like me, you'll probably be infuriated.

Adding insult to injury, not only was this the opinion of one writer, CDRF found it worth putting up on Facebook. If we don’t say something, everyone will think that we too feel there are many benefits to disability.

The author's attitude, which CDRF seem to support, is exactly the kind of thinking that holds back a cure for paralysis and other disabilities. As long as people keep talking about our good fortune and all the supposed ‘benefits’, a cure will never be urgent, but it is. This guy makes it sound like being paralyzed is OK because of all the great benefits available.

Well, I don’t want this guy speaking for me, and neither should you.
Some people have ‘liked’ his post on Facebook as he refers to Thanksgiving and Christmas as a time to reflect on the blessings of disability. Others have asked what is there to ‘like’. The suffering, perhaps? His sentimentality about this time of year really detracts from the far more serious issues of living with a disability year-round.
Instead of using the holiday season to be thankful for our disabilities, lets use it to appeal to the feeling of human solidarity that will someday lead to a cure for our devastating injuries.
You can help make CURE a priority in two really quick steps by letting CDRF know that they should get back to concentrating on curing paralysis instead of sending us insulting holiday messages.
  • Send a message to CDRF by clicking below and tell them that you're insulted by the "Benefits of disability" and demand that they take it off Facebook and their website.
  • Go to the Facebook page and leave your own comment to the author
This campaign has now ended. Thank you for all your support.


  1. As I said before many times orgs start out with good intentions and eventually lose sight of their original goals. The org takes on a life of their own. Two of the biggest paralysis orgs have gone that route, Rick Hansen and now Chris Reeve.

    I give my support to Unite to Fight as they started out being part of or close to an existing forum and made a 180 degree and became more independent of carecure. By doing so they are free to pursue their grassroots goals and not those of a single researcher.

    1. If you'll check the facts, U2FP hadn't financially supported or endorsed a SCI researcher or specific research project in the past. They've been dedicated to producing a conference for the sci community for 7 years and never lost site of that goal. Their annual Working2Walk Science and Advocacy Symposium is fantastic! They've always been the independent voice of cure and work hard to keep that conference going every year. Those volunteers have accomplished that mission for 7 years now for the SCI community.

      U2FP has NEVER given financial aid to RHI/RHF, ChinaSCINet, CDRF, SCINetUSA or any of the others. They've always been an independent 501(c) SCI org just the same as many others. Their members do post frequently at the online public forum called carecure and many other online public forums just the same as members from other sci organizations. They are independent and free to voice their opinions on the progress of SCI research. They unite the community through education, organizing and taking action.

      U2FP is supporting a sci research project on their website for the first time this year called the CNS project with 4 collaborating sci labs and researchers. They are Drs. Silver, Steward, Liu, and He.

      No single researcher, online chat forum or government entity has ever owned the U2FP org. Their mission has alway been clearly posted on their website since their inception.

    2. I see they have an impressive Scientific Advisory Board. That's great!

  2. @Bob...What "support" do you give?

  3. Carecure is only an online public forum created by a researcher where the community talks. It is NOT a 501(c) SCI organization of any kind.

    Unite 2 Fight Paralysis is a volunteer 501(c) SCI organization that focuses on spinal cord injury cure research. They also do the Working 2 Walk symposium for the community every year if they have enough donations. The symposium they host each year has many different researchers, advocates and government officials speaking to educate the community. That meeting is awesome!

  4. The benefits of disability...I just cannot understand someone publishing this kind of an article. I feel like we're trying to make the general public think that it's just wonderful to be paralyzed. Doesn't everyone want to live this piece of cake lifestyle? Sad idea to put this revelation out to the public. Why would CDRF put this out? Didn't Christopher Reeve make his intention understood? He wanted a CURE. He didn't want to bask in the glory of a beneficial disability!!!!!! OMG!!!!!!!!!!!

  5. There is much worship of Dr Young on his forum and its promoted also. Here is a post by Jim an administrator there:"The thing that makes me shake my head in bewilderment is the fact that without Dr. Young and this great website he founded, some of the 501(c)3 foundations that were formed because they used this website as a springboard, would not exsit and yet they sometimes seem to be the ones to instigate the whispers here and there that Dr. Young is some how off the mark and he needs to be reeled in and brought to instant justice with embarrassing posts on the very forum he dedicated his life too!!" BTW, it used to be worse, if someone questioned Young they were attacked by other members in a cult like fashion. Just a few days ago that same administrator had this comment:"Paolo, for you to suggest that Wise deliberately attempted to confuse people goes beyond the pale. You do absolutely nothing for this community and I am sick and tired of your baseless attacks on Wise. You are pathetic." BTW it was Paolo's work that turned us on to the article on CDRF about the benefits of disability. BTW on the CDRF forum Paolo wasn't chastised for his comment. Jerry Silver used to give his opinion on Carecure frequently, he also was put down by that administrator for his reviews of Young's work and style. Young doesn't accept criticism well and still holds on for dear life to his methylprednisolone treatment by disavowing the many negative peer reviews on it.
    It is wonderful that Dennis and U2F have come of age and is the true voice of the community.

    1. So here's another thing to think about. Most of the funds you contributed to JustADollarPlease have been spent. With not such positive results in China so far why was that money spent to approval for trials in the USA? With the final results not even in, and they needed to be sent to the FDA, what kind of work could have been done regarding FDA green light to do USA trial? Certainly not a few hundred thousand! Also, how could they train any investigators as there weren't any to train?

    2. As Sam Maddox from CDRF has said...many in the community have an emotional and financial stake in the success of an UCBC and lithium treatment being tested in China. It is simply Jim's job to be a promoter/fundraiser/administrator at that online forum. I think people are well aware of that.

      Just because various organizations membership from many countries, rehab centers and sci researchers post on that forum (which there are dozens), it doesn't mean they all should be classed as either worshipers or mortal enemies of it's founder by you or Jim either one! Your conjectures posted here reads like a sportscaster commentary with your own personal agenda added to it. This blog post is about BENEFITS OF DISABILITY, but all of your comments amount to promoting YOUR agenda instead of talking about the post. I think you're a Jim Junior...

    3. There is is a big difference between Jim and myself. Jim's tactics as a promoter crossed the line. He need not bully people if they really have nothing to fear or hide. My job is to give my opinion. And my replies are not off topic. Basically Dennis has exposed RHF and now CDRF. Wise and Company also should be scrutinized, however as you can see, that is frowned upon on CareCure. And it kind of offers Wise a buffer zone, because for social reasons he attracts people, and they either feel obligated to the man or they still haven't become cynical and believe his promises and buy his excuses. The community in my opinion would do far better if they had their own independent blog site to discuss issues. BTW my comment about the justadollar please money spent was not about China, it was about it being spent in the USA. The issue being the trials in the USA was hinged on the results of the china trials, so with the results just coming in now how and why were those funds already spent?

  6. No, there's no difference at all there Jim Junior. You're still promoting your own agenda like a broken record. Would you care to at least comment on BENEFITS OF DISABILITY or do you dare to stray that far? It's a stretch, but give it a whirl. STRREEEEETCH!!!!!!!!!!!

  7. You guys have gone off the deep end. You're so far up Crazy River I think we need to send Martin Sheen in a freaking PBR. Lashing out at blogs for merely explaining disability benefits, because they use inelegant wording in their headlines. Griping about leading care researchers because you're worried they're too popular. Of all the things you could be doing to advance cure research, you choose to spend your time on this crap. It's almost like there was some blowhard union shit-disturber behind everything, and the only tool he has in his creaking, empty toolbox is to mount pointless, vituperative vendetta campaigns. As the old saying goes, when the only tool you have is a hammer, every problem begins to look like a nail. I think someone is transferring his internal anger at the paralysis card he drew to something quite toxic. To the SCI people participating here: when your day is over and the heat of the moment (of participating in this crap) has passed, when the lights are out and you're lying there before sleep -- reflect on how much of a contribution is really made in this superficial Stalinist game of attacking people and organizations because they're insufficiently pure in the cure movement.

    1. I never saw this comment before. I don't think that I've ever been both red-baited and cure-baited in the same post before.
      If the poster would leave a name, it would be great. In the mean time I would ask him to read it again and realise that we are not attacking the author but asking CDRF to take it down because it is offensive.
      The writer is an adult and his post is not a mistake as he has already defended it. It's not a matter of inelegance, it's a matter of offensiveness.
      Dennis Tesolat