The point of the letter is to ask for direct talks between the foundation and people in wheelchairs to discuss RHF’s past, present, and future commitment to a cure for spinal cord injury.
Our goal is to make sure that money that is raised in the name of cure, is spent on cure, and we hope to increase the participation of spinal cord injured people from all over the world in the Rick Hansen Foundation’s stated goal of a cure for spinal cord injuries.
We feel that as an organization dedicated to ‘a world without paralysis after spinal cord injury’ RHF can play an even greater role in curing paralysis. RHF is one of the biggest, most well financed organizations dedicated to spinal cord injury in the world and because of this could unite the international community in achieving a cure in the near future.
We don’t want to just donate and cheer, we want to play a role in achieving Rick Hansen’s dream that started twenty five years ago.
The letter, as it was sent, can be seen below. And everyone will be informed of their answer.
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I hope they ignore you and they probably will. RHF has a good balance of quality of life, awareness and cure research. They should never be bullied by stem cell cure-or-die zealots. I've been an SCI for 15 years and 3 months. I would like a cure too but bullying organizations that do excellent work will do NOTHING. Get some perspective.
ReplyDeleteI don't see this as bullying at all. I see it as merely asking questions and wanting clear answers. That is wonderful that you feel they do excellent work and it may be true. But if they are raising funds in the name of CURE and not putting those funds towards any cure, then as a donor, I would feel like I was tricked into giving the organization my money. If the organization has been operating honestly and with integrity, then they should, by all means, welcome the opportunity to share this information with the SCI community so everyone can feel better about what's going on. I think if some simple questions are answered (and hopefully the people of the SCI community are shown we can trust this organization), then it can only benefit everybody.
ReplyDeleteDear Linden,
ReplyDeleteCan you please explain how asking questions and wanting dialogue is bullying.
It's sad that these days people use the bullying tag to describe honest activity.
RHF doing good work and people asking the percentages the spend on cure are unrelated. I don't remember stating anywhere in this blog that they don't do good work. Maybe you should read what was written rather than just imagine that people are bullying RHF.
Asking a large SCI organization questions about funding and their efforts for a cure is a wonderful thing. The very patients suffering SCI should be able to have dialog with large organized foundations that collect money in the name of CURE. Thank you for taking the time to help the community open up dialoge with the RHF. I look forward to the communication and open opinions on the effort towards curing paralysis.
ReplyDeleteThings have gotten so out of whack in the SCI cure community that for some, the only acceptable way to spend SCI-related funds is on regeneration of the nervous system, putting all the eggs in the handful of baskets held by Keirstead, Young and so on. This has started a backlash against investment in rehabilitation therapies, best practices, other ameliorating therapies, quality of life research, and accessibility innovations. The zealots are dismissive of building networks to co-ordinate activities, registries to align treatment modalities, etc.
ReplyDeleteWell, I and a lot of other people with SCI believe that cure and QOL research is a much bigger umbrella than the one path your desperation is leading you to bet on.
I’m all for transparency and would be happy if a more detailed list of research investments were laid out. (Their audited financials, however, give me a pretty good picture when I look at the organizations that received RH funding.)
So five people sent in a letter with leading questions. I say “leading” because it’s obvious that the very next step would be to crucify the RHF for pretty much ANY spending it did on anything other than CNS regeneration. You know it and I know it, just admit it.
It’s a red herring to suggest that RHF/RHI could be “misleading” people just because the org and its founder do talk about cure, and a vision of a world without SCI. There are more paths than one to that vision, and I consider the translational research activities part of the picture, on the way to cure.
The majority of you are not in Canada; you need to know that 79% of the revenue that the RHF/RHI gets comes from Canadian governments, so please don’t be too concerned about this horrific “scam” over there in Spain, Italy and Japan, okay? II happen to be a Canadian taxpayer with SCI and am proud of the Hansen legacy and the activities of the organizations.
I have zero connection with RHF/RHI, other than as a supporter and minor donor. But if you asked me to make a list of the top 20 institutions, governments or leaders that I have a beef with, in the quest to make progress for people with SCI, the RH organizations would be #999. That’s what frustrates me so much about the targets you pick.
Dear Linden,
ReplyDeleteSorry, didn't say that RH was a scam.
Didn't say that they shouldn't be spending on care or quality of life.
Didn't say that they were lying about "a world with paralysis after spinal cord injury".
You didn't read you just jumped to conclusions.
Also, about where we live, I'm sorry but you must have missed RH's world tour when he kicked this all off. Must have missed his trip to China, Israel. Must have missed his recent trip to the US where he signed a memorandum of agreement with the Miami Project. Must have missed his recent visit with the Secretary General of the United Nations.
RH IS international, and the second you lock him in a Canadian flag straight-jacket, think about the fact that Rick has been an internationalist since day one.
The reason there are people from four different countries is exactly this. It could have easily been five Canadians. Also, the reason we went with a small group is not because only five people exist who want to know the answer, there were a whole bunch of folks who sent an email to RHF asking for their break down on cure spending. BTW, we didn't write to ask that he stop other spending, but you must have missed this as you haven't read anything.
Linden,
ReplyDelete"So five people sent in a letter with leading questions. I say “leading” because it’s obvious that the very next step would be to crucify the RHF for pretty much ANY spending it did on anything other than CNS regeneration. You know it and I know it, just admit it."
This isn't true, it's just what you want to believe.
Oh, geez, my bad, I totally misunderstood you. So you just want them to tell you how much they're spending on cure research, right? And that'll be that. End of story. No problemo. On we go.
ReplyDeleteAnd here was me leaping to conclusions. See, I was reading stuff posted on other internet sites, stuff like "if RHF is serious about speniding [sic] on a cure, we'll be happy to hear this and help RHF..." and thinking that, given the context of the posts, this might mean that your only definition of "serious" is the CNS regeneration work.
But now that I know you're so open minded I'm absolutely confident that the broader world of building cure-related infrastructure and collaboration would fall within your definition, you being so reasonable and guileless in posing your question.
That's a load off my mind. Now that I know this definitely isn't a case of of a minority of folks with time on their hands dotted throughout the world taking the viewpoint that only CNS regeneration/stem cell is legitimate cure research, that's a whole different story.
I'm sure now that you'll support their work in better care practises, research into the secondary conditions brought by SCI (which are often the cause of mortality), employment and accessibility work, etc. 'Cause, hey, I don't know about you, but that's stuff that is making the BIGGEST difference in my life, personally. But that's just me. It's all good, right?
Please accept my apologies for mixing you up with the single-minded zealots on the CNS/stem cells bandwagon.
You'll notice that I took all the posts down from the guy who criticizes Dr. Wise Young and me from being some Young flunky.
ReplyDeleteIf you want to write stuff, back up your opinions, don't just criticize others with no proof or any way to back up what you say.
...it wasn't my opinion, it's backed up in black and white, you don't like hearing it. Emergency Room Protocol warns against the use of steroids for sci. As far as Ampyra the fda reviewers themselves declared it didn't even beat the placebo. Yet on his web he is still selling them:
ReplyDeleteDr. Young was part of the team that discovered and established high-dose methylprednisolone (MP) as the first effective therapy for spinal cord injuries. This 1990 work upended concepts that spinal cord injuries were permanent, refocused research, and opened new vistas of hope. This team also played a major role in Andy Blight’s signal work on 4-aminopyridine (4-AP), which shows significant promise for increasing nerve conductivity.
And here is where the fda says it didn't beat the placebo:
The Division also remarked that for the 3rd step of the analysis testing, the fampridine responder group is a small selective group which is very likely to beat the placebo group regardless of the treatment effect.
The division observed that in fact, if the roles of comparison groups were reversed, it is likely that the responders in the placebo group would beat the Fampridine group (responders and nonresponders) as well. http://www.accessdat...s000_CrossR.pdf
With bogus treatments even after so called rigorous clinical trials I favor quality of life.
I censored myself on this comment. Wouldn't want me to take down my own stuff.
ReplyDeleteDennis, I like your energy, but don't you see we need to even monitor so called evidence based science? Speak about that and maybe I could join your cure efforts. And there is no harm done in showing legit medicine is capable of offering bogus treatments, unless you want to think you will be the lucky one who beats the odds and does well with a bogus legit treatment. And think about how much money is being waisted on Ampyra. There got to be a better way, and it ain't beating up RHF. Do you question how much money Wise makes? How many shares of ACORDA he held?
ReplyDeleteDid you ask him how he says offshore clinics can get away with their treatments because of the placebo effect, yet Ampyra can't even show positive evidence of beating a placebo! Sounds like a scam to me.
ReplyDeleteDennis, I can quote Wise on that too! It so interesting he uses their same model!
ReplyDeleteDam right I ain't a happy camper seeing how a select group buy into the continued baloney of a self anointed savoir which has a zero track record and has taken in millions of dollars and isn't questioned at all because he is preaching to the choir! False hope won't help you take a step! It wastes so much good money! Imagine a researcher who on one hand blatenly scolds offshore clinics and does exactly what they do! Thats what your goal should be, not beating up Rick Hansen!
ReplyDeleteAnd I don't go along with people who admit Wise won't ever have a cure, but leave him scot free because they say he is a good cheerleader! Hey you want more crap therapies? Continue on! We don't need roque scientists cheerleading crap. We need real therapies and maybe than Rick will invest! So let me hear it Dennis. Say it! Wise Young is nothing more than a so called legitimate researcher who offers nothing better than il-legitimate researchers!!!!!!!!! And he drains money, way more than rick hansen could provide. It is a scam..............
ReplyDeleteHere you show you would kiss Young's ass: Today, 11:45 AM #2
ReplyDeleteStemCells&AtomBombs
Senior Member
Join Date: Jun 2010
Location: Osaka, Japan
Posts: 231 As always, thank you not only for your scientific knowledge, but your kindness.
Scientific knowledge appears to be more plentiful than kindness, so thank you for showing gentleness to those who ask questions.
And he screwed up with steroids and Ampyra! Hey when he gives you tomato juice or his kool aide.......................
How kind is he? If he that kind just donate to his dollar a day and let other sci's enjoy quality of life while you a sucker for his way of cheerleading useless garbage again and again. I really think Wise should be removed and exiled to remote part of afganistan!
ReplyDeleteSo, lets summarize. Steroids, are no longer the standard of treatment. 4-ap whatever worth it had was available for pocket change and now after clinical trials it is very costly and couldn't even beat a placebo. And a small fraction of the sci community is so thankful for that and even say thank you for your hard work, they even get annoyed at some asking questions, I think they do that hoping he will put them in one of his trials. And my posts are not against him, but how a select few worship him, including you Dennis. I give Young credit for having his website where he can muster support. But, the cure shouldn't be like politics. So sad to see science stoup to that level. Seeing him crusading for evidence based and peer reviewed treatments and his being no better than offshore clinics suggests we need to not focus on funding from a crip who has helped us, but, we need to clean up the FDA and demand treatments that are better. Do you agree? Also, do you think the cure will be here in five years, I heard that over and over again. And, I fear cord blood and lithium won't be any better than steroids or Ampyra. Statistics, endpoints, etc all big business bullshit. So be my guest to try to stop the one thing that makes our lives better, the support Hansen give to help us NOW!
ReplyDeleteTell people that need a wheelchair or catheters that they can't have them because you think a cure will be here not in five years or seven years or 10 years, and do you think they will not need to cath? or use a wheelchair? After a cure like steroids or Ampyra? Again, I urge you to stop your abuse of Hansen and question the false hope! Do that and I could support you.
ReplyDeleteIt's already been shown junk treatments get approved and bring in huge sums of money and no one is cured at all! Are you asking for more of that, gee I hope not.
ReplyDeleteWhat a rip off, last year our already high expenditure for healthcare had a new entry, Ampyra. And the drug couldn't beat a placebo! And it doesn't stop the progression of MS. Why I bring it up is because a patient group persauded or at least the fda could blame approving it on that basis. I think you Dennis also would settle for an approved junk treatment. Until you clean up the FDA and researchers who promote hope through snake oil it's useless to ask for cure money from Hansen. BTW, in Hansen country Ampyra is still not approved, god bless the maple leaf north of the USA for good judgement.
ReplyDeleteAmpyra is approved for the treatment of MS. Not SCI! You need to check your facts before posting all this whining.
ReplyDeleteNobody has proposed that RHF take away wheelchairs and cathaters in exchange for anything. You seem to have your facts mixed up.
You are terribly confused!
This is about the funding of RHF for curing paralysis and working on research. He says he's funding research but he's not showing anyone what he's funding or how much is being spent on it. Check the facts my friend.
I'm so happy that this wrongheaded assault on the Hansen organizations fizzled, and they realized that you're just a rump, a handful of crackpots.
ReplyDeleteI and some others have been writing to them and the Governor General (which was a silly target for you anyway as the GG has no involvement with internal decisions).
You used all this evasive language, but your bottom line is that the only valid form of support for cure is CNS regeneration, which is a zealot's position that the majority of us in the SCI community are willing stand up and call BS on you.