As Rick Hansen starts his 25th Anniversary Tour, some people living with spinal cord injuries are asking questions about where the money is being spent
By Paolo Cipolla, USA
As a person living with paralysis due to Spinal Cord Injury (SCI) I am interested in medical research in the field. Since the first time I have heard about Rich Hansen I knew that to find a cure for SCI was one of his dreams and he was working on it to make a cure become a reality.
In the last few years I have been attending several international SCI research meetings to learn as much as I can about the field.
Around the world there are many SCI organization that say they support medical research to find a cure for SCI. Rick Hansen Foundation (RHF) is one of the biggest if not the biggest of the world.
To find a cure for SCI I have learned it is necessary to find a way to repair the damage of the spinal cord. Many animal studies have indicated that it is possible to repair the damage to the spinal cord, but more research is needed to develop effective therapies applicable on humans.
Rick Hansen snubs Islander with Cerebral Palsy
That is well known for people that follow SCI research, so using common sense people expect RHF is funding many research projects focusing on the regeneration of the spinal cord.
Some time ago I went on RHF web site to find out what they are doing exactly to find a cure for SCI.
With my deep disappointment I couldn’t find anything significant regarding the regeneration of the spinal cord, so I decided to involve some friends for a deeper “research”.
Together with Dennis Tesolat, author of the blog “Stem Cells & Atom Bombs”, and other friends we researched the web sites:
– Rick Hansen Foundation:
– Rich Hansen Institute (funded by RHF): http://www.rickhanseninstitute.org/
– ICORD (International Collaboration On Repair Discoveries) that is located within the Blusson Spinal Cord Centre (BSCC) on the site of Vancouver General Hospital and is thus also a part of Vancouver Coastal Health Research Institute (VCHRI). The BSCC includes ICORD, the multidisciplinary Brenda & David McLean Integrated Spine Clinic of VCH, and the Rick Hansen Institute (RHI)
Only 55% of Rick Hansen Fundraising Stays Local
ICORD administer money coming from RHF
Unfortunately we didn’t find any significant evidence of medical research for the regeneration of the spinal cord supported by any of the organizations related to Rick Hansen. So we asked them a direct question with the following email (posted on the blog “stemcellsandatombombs”.)
The question was:
“I would like to ask you to provide me with the percentage of funds being spent by RHF on CNS regeneration and a cure for SCI.”
The answer received was evasive in my opinion. It didn’t provide a simple amount or percentage, as asked as you can see at this link.
So we asked again the question link.
This time, the Rick Hansen Institute provided a reply to our percentage question.
“Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives”
The answer
But we have asked what % of funds have been spent on research for a cure and they provided a number for research (generic) plus quality of life. For more details see the link.
Understanding that the issue of research funding may not be something that can be easily discussed by email we (a representative group of Canada, Italy, Japan and Spain SCI’s) decided to ask for a conference call by Skype with the CEO, Mr. Art Reitmayer to ask about:
1. How much of the 81% is going to cure.
2. What research have they funded over the past ten years in regards to CNS regeneration?
3. How the funding is doled out.
4. How we can play a bigger role in making sure that promising research is not abandoned due to financing.
You can see the letter at this Link.
We received a response, but the issue of a discussion was ignored, so now we decided to write to the governor general His Excellency The Right Honorable David Johnston that has chosen to serve as Patron of the 25th Anniversary campaign as we hope he may understand better the importance of a constructive interaction between RHF and international people living with SCI, since Rich Hansen has rolled around the world through 34 countries.
Here is a link of the letter to the governor general.
In the last few years I have been in contact with several people from Canada living with SCI. All of them believe that Rick Hansen is investing money of his organization to make a cure happen one day soon. Unfortunately I couldn’t find any evidence of that, but many people have been donating to RHF thinking they are working to find a cure for SCI.
I think it is time that RHF becomes full transparent and answer the questions about how they are really spending money donated by people.
Paolo Cipolla
Paola Cipolla is an Italian-born American with spinal cord injuries. He has a degree in science, his pilot’s and flight instructor’s license in Italy. A motor cycle accident in 2004 resulted in spinal cord injuries and paraplegia. His main interest is medical research to find a cure for SCI. He has made active connections with researchers, doctors and other advocates around the world. email paolocipolla1 “at” gmail.com or Facebook.
bob
I believe this movement against the Rick Hansen Foundation comes from the over hype on the carecure website. Many members join that forum because they are promised very robust cures not only in their lifetime but in a few years, where no one would even be able to now you used to be paralyzed. And they ask for donations too!
bob
I don’t blame people for wanting a cure, but, they must be able to distinguish between real and fake overhyped hope. At present there is nothing that will be a cure as hyped on CareCure. And maybe there really isn’t anything in the pipeline currently worth funding, so I find it may be good judgement by the Rick Hansen Foundation to work for things that can help now, as they have by funding projects to remove vent dependents to breath on their own. I might add the researcher running carecure made history with a startling discovery in 1990 that methylprednisolone reduces further damage, however after years of peer review it is no longer a standard of care and it’s use is warned against. The same researcher who promises robust treatments also was the founder of Acorda which recently got approval for a MS treatment to improve walking. It brings in over 200+ million a year and it clearly couldn’t beat a placebo and the increase was a half a second for a forty five second walk. Is that ROBUST?
With that in mind, I am glad Rick Hansen Foundation is not investing in those kind of cures.
StemCells&AtomBombs
I’m sorry, but I don’t understand what the two above posts have to do with asking an organization that raises money to CURE spinal cord injury how much it’s spending on CURE and what projects they are funding.
Bob, sorry, but I guess you’re missing the point and believe that the paralyzed should just sit down, shut up, open their wallets, and clap their hands.
Why let us pea brains deal with all these hard questions when we have other greater minds at work on our behalf.
bob
Stemcells&atombombs, the 2 posts you mention indicate over hype of cure, over promises and yet marketing frivilous and rather dangerous treatments. Cure funding shouldn’t support that kind of work. But, if you yourself want to donate to that you can. You say Rick Hansen over hypes his cure funding, I say some researchers over hype how close a cure is to get funding. I see some progress, but it’s not around the corner. Would you like Hansen to fund trials for cord blood and lithium? And when something that is really promising comes along they won’t have funds left to support it? Or, even help people pay for a treatment? Science takes time, no matter how much funding.
Paolo Cipolla
Bob we sure don’t want Rich Hansen Foundation to waste money. I am afraid you missed the point of the article. Please take some time to read it again.
bob
I fully understand the article! It is from a group on carecure brainwashed that the only missing link to a cure is funding.
bob
Face the facts Paolo. You and Stemcells&Atom bombs discuss this topic on carecure concerning Rick Hansen. I find it very odd you guys are trying to put Rick Hansen in a corner and ask him to defend himself and never question the researcher in charge of carecure. So let me question you here, Are you happy with cord blood and lithium? Or Ampyra? Or Methylprednisolone? Are those the kind of treatments that a bystander couldn’t tell you had a spinal cord injury? Have you seen posts on carecure by another brave researcher criticising the hype there? And how he feels it is wrong to solicit funds from spinal cord injured? Again I got to say I appreciate your dedication to a cure, but I think you are making some wrong choices.
Paolo Cipolla
Bob, what would you do if you were Rich Hansen?
bob
Lets keep things in order, you didn’t answer any of my questions.
Winnie
It is wrong to advertise to the entire world that you are working on a cure for paralysis when in actuality you are working on nothing of the sort. I do believe the people at Rick Hansen Foundation and Rick Hansen Institute need to be funding good valid research and working towards clinical trials for spinal cord injury. They should be doing the business they profess to be doing and not hiding the obvious fact that they are not. They need to hear the voices of the people suffering from paralysis that know the good progress that has been made in the research labs all over the world. They need to be focused and driven for the cure of paralysis. The hide and seek game should end. We need a cure for paralysis and the Rick Hansen organizations should be putting forth an earnest effort to help.
bob
Winnie on September 29, 2011 at 3:14 am said:
It is wrong to advertise to the entire world that you are working on a cure for paralysis when in actuality you are working on nothing of the sort.
__________________________
That is so true, unless you drank the CareCure kool-aid. That researcher there is promising a cure in a few years and that no one would know you ever had an spinal cord injury. That researcher even set up “just a dollar please” asking (preying on)spinal cord injured to donate to his trial on cord blood and lithium, which doesn’t have a million to one chance to meet his promise. So, when I read these comments by carecure members attacking Rick Hansen I have to say they come from brainwashed drinkers of the kool-aid.
I have yet to hear what is so promising in the field of spinal cord injury that isn’t being funded by the NIH or even by venture capital. Until then, why support a pipe dream? Rick Hansen is doing a great job.
Joyce In Texas
Bob:
I’ve been reading your posts to Dennis and I feel you are being unfair when you put out information about CareCure and what Dennis has brought to light. Dr. Young isn’t asking much from the spinal cord community. He is trying to let others know it’s of grave importance to cure spinal cord injury. I don’t know if you’re disabled, so I’m going to give you some of the finer points of what my daughter has live with until a cure comes to be approved by the FDA. She has always had issues with pressure sores, blood pressure issues, needing someone to care for her everyday of the day to help her with the daily living functions of an able bodied person, can’t regulate her body temperature like an able bodied person can sweat, and a whole other bunch of issues I don’t want to discuss at this time. I also would like to know why the privileged like our Governor Rick Perry is provided with an unapproved adult stem cell treatment (July 2011) for his back when there are millions of people like my 26 yr old daughter waiting for a cure for spinal cord injury. Getting back to CareCure website and Dr. Young’s staff, if it wasn’t for CareCure my daughter would have never found out about the treatment centers for Project Walk. CareCure made me feel like I could be my daughter’s attendant and take care of her needs when no one else would help us even though she has been put into the Medicaid system. So, please don’t condemn CareCure for making the spinal cord community aware of what needs to be done to cure spinal cord injury. Yes, I have been following the spinal cord injury sites since 2007.
I sent this to the Christopher Reeve Foundation for help with advocacy for spinal cord injured I never received a response when I posted on their facebook site in August 2011. I feel Dennis and the rest of the members of this group need to focus on what these organizations like the Christopher Reeve Foundation are doing for the cure for spinal cord injury.
This is what was posted on Christopher Reeve Foundation site on facebook:
Please see her blog at http://samsr2wblog.tumblr.com/
I sent emails to state officials and I think I need the support of an advocacy group to help stop Medicaid HMO(s) in Texas from making medical decisions for person(s) who should continue physical therapy until they are functional and independent enough to live on their own. My daughter’s Medicaid services have decided that she is no longer needing physical therapy to allow her more mobility and independence. It shows that medicaid doesn’t give a damn about their spinal cord injured communities. I know my daughter will be more independent than what others may think or know about spinal cord injuries.
Dan Baine
This is not a movement against the Rick Hanson Foundation. As an outsider I see it as a simple attempt to get answers as to how money donated by the public is spent. Many people donate with the idea the money is going to research cures. They have a right to know if that is how the money is being spent.
I find the reply from the foundation evasive.
Stephen Pate
I went to one of those Rick Hansen rallies in Toronto some years back. When I came back to PEI, I wanted to get one organized on PEI. It seemed like a good idea and Hansen is a charismatic person,
I was told by people I respected that they had worked for Rick Hansen in the past and that he was an arrogant, greedy person. The show was all about Rick Hansen. He literally took all the money from the PEI fund raising and kept it. Only when the local organizers complained did he return some of it.
Rick Hansen is almost a cult. People worship him and politicians and business people flock to Hansen for the publicity. Giving money to Hansen absolves them of the responsibility of actually doing something to advance the human rights of people with disabilities.
They say Vancouver is the most accessible city in Canada because of Rick Hansen. Great. He does nothing for PEI or Toronto when he comes through other than take money, get his picture taken. He also takes politicians off the hook for making our province accessible.
PEI disabled second place to Rick Hansen
Only 55% of Rick Hansen fundraising returned to PEI
Dan Baine
I can’t really comment on Rick Hansen per se as I don’t have first hand knowledge.
There is a place for both kinds of fund raising – for making the life of the disabled easier (accessibility etc) and for a cure. I choose to donate my money and time for a cure.
When the foundation advertises they raise money for a cure they need to make it clear how much money is going to what area. Maybe people have other knowledge but from the replies to the questionnaire it looks like they are evading the question.
I’ve donated to the group. I have the right to know how my money is spent. It’s plain and simple.
bob
Joyce In Texas on September 29, 2011 at 5:22 pm said:
Bob:
I’ve been reading your posts to Dennis and I feel you are being unfair when you put out information about CareCure and what Dennis has brought to light. Dr. Young isn’t asking much from the spinal cord community.
_________________________________________
You mean his asking for just a dollar please is not much? If he was on to something worthwhile wouldn’t he get grants? And not have to hype a cure and solicit/prey on desperate families? I also very well know about secondary issues such as bowel and bladder and have been following research for more than a decade, so don’t think I am a newcomer and I am not of knowledge. Promises, Promises and so far methylprednisolone was shown not to work and Ampyra is starting to falter. I am looking for a cure and I know a fake when I see one!
bob
And maybe Hansen is to blame also! I can see that. But, we also need to monitor researchers also. It’s a total shame when a researcher hypes a cure saying in just a few years you will be walking! Is he that desperate for funding?
bob
Joyce In Texas on September 29, 2011 at 5:22 pm said:
Bob:
I’ve been reading your posts to Dennis and I feel you are being unfair when you put out information about CareCure and what Dennis has brought to light.
__________________________________________
I am not at all against Dennis, just that he posts and uses CareCure as his home base. I love what Dennis does, but I must say I am against the researcher Wise where Dennis posts. I would be willing to work with Dennis and Paulo but not when they add any meaning to the carecure website. And the knowledge one learns there about care is from other members, we don’t need a has been researcher making promises so we are so afraid to question him. It really is time for us with spinal cord injuries to start our own website so we don’t have to watch what we say and not be afraid to say negative things about researchers like Wise Young. If we could do that and also see that Hansen supports research I would be happy. Right now, I am so against Wise Young and Hansen, but, when push comes to shove, even though Hansen isn’t living up to his promise, he still does way more for us than the fake hype of Wise Young! Maybe it is time for a real grass roots movement for the cure.
bob
To the new comer one would embrace a researcher like Dr. Young, He sells hope and who wouldn’t want that. But to someone who understands the science and has been around for a long time you eventually see that Wise Young is preying on people with spinal cord injury. He even knows he could do a trial and he will find responders showing improvement even though not from the treatment. He did it before. So when dennis and paolo use his web site I can’t help but challenge them.
Winnie
Well Bob, there are not too many sci forums around. The issue you avoid with your rantings is the Rick Hansen Foundation. That’s the “SUBJECT” ! Why exactly is Rick Hansen gathering up everyone’s money for a cure, when he doesn’t actually fund any research for the cure?
RICK HANSEN FOUNDATION
RICK HANSEN INSTITUTE
CURE. CURE.. CURE…
What is going on there? You think you’re such an expert, how about solving this instead of ranting to the wind? I’m like many others that supported the foundation and thought they were funding research so I could get out of this wheelchair in the future. Now I see they fund nothing at all related to a cure. What is going on there? Can you stay on “subject” for more than 30 seconds?
bob
I have stayed on topic and all you can say is Hansen is wrong and if that was fixed we would be cured! That is so wrong, especially when researchers like Wise Young prey on us. Why you let that slide really I don’t understand, remember the saying a chain is as strong as it’s weakest link!!!!!!!!!!!
bob
Winnie, do you know of any research that applied for funding from Hansen that was turned down?
Paolo Cipolla
If I were Rich Hansen…
I will be attending SCI scientific meetings and visiting researchers in their labs to keep up with the progress being made and also to make sure researchers are not screwing us. All that to make sure just real promising research progetcs are supproted.
Then I would also keep saying to the media that a cure for SCI is an urgent necessity as SCI kills, it’s just slow.
Statistic are very clear in showing that life expectancy for people living with SCI is shorter then it should be especially for people with hight level SCI..
Finally I would also roll around in the cities of Canada in sicret to find out problems of accessibility to make sure they are fixed.
Unfortunatly I keep hearing he spends most of his time fishing…Is that ok?
Paolo Cipolla
I meant Is it ok that Rich Hansen makes 500 000$ a year to go fishing most of his time?
Winnie
Thank you Paolo for writing such a nice informative article. It is very obvious that you visit labs and the researchers and you know the research that is actually taking place for SCI. If more people could get focused and understand the promising research that is taking place in the labs we would be further ahead. (There is way too much time spent on the “professional whiners” and “naysayers against cure funding” that have no idea of the progress that’s been seen with all of the research). Thank you for bringing your contributions forward!!!!
bob
Winnie on October 1, 2011 at 6:40 pm said:
(There is way too much time spent on the “professional whiners” and “naysayers against cure funding” that have no idea of the progress that’s been seen with all of the research).
Pardon me, But I never said I was against cure funding, I said, and still feel we must make sure the funding gets into the right hands, and Paolo agrees with that. So stop calling people whinners, unless you feel there is unlimited amounts of funding available that even if some goes to research groups that are over hyping a cure with useless low hanging fruits(nothing innovative), that there is so much funding eventually the research group that is really doing good research will get some money. There are some researchers that work the system, always available to the media, always acting so concerned and yet have nothing to offer other than hype. One researcher even has a website and he attracts people with his promises. It’s like a cult like atomosphere there. In a way that even is more upsetting than what Rick Hansen is being accused of!
Winnie
The “professional whiners” and “naysayers against cure funding” obviously don’t mind certain “exclusive” celebrity type people dipping into the cure funding, however has a shit fit when he thinks other people might be doing it. It’s interesting that Rick Hansen is just peachy keen ok to stuff his pockets with money that should be used for cure research since that’s where he tells everybody it’s going… If you tell people you’re gathering money for a cure that is fine, but don’t turn around and stuff the money into your pockets and pretend you’re helping with the cure. That’s just dishonest and selfish.
Paolo Cipolla
Thank you Winnie,
I actually attend SCI scientific meetings when I can to understand what is going on in the field. There are good things happening, but also many questionable things.
We (people with SCI) must act as watch dogs otherwise it is so easy to be screwd buy researchers and SCI orgs like RHF.
I do believe Rick could help a lot, but it seems he doesn’t care or he is just ignorant…I don’t know… I just wish he could prove me wrong but I am afraid he can’t, otherwise he would have done so already.
@ Bob, what are your suggestions to make a cure happen sooner other than attaching Wise Young?
bob
First I think we need to see that hoping for the kind of cure Wise professes is not just a few years away. We should work with researchers that can help with doable things, like bowel and bladder, removing people off vents. I was so happy a respected member on carecure posted this yesterday:
I’ve read through as many of the papers that have been listed which constitute the rationale behind umbilical cord stem cells and lithium. All the papers used the stem cells at “acute” stages, (most after 1 week following SCI). Nothing at “chronic” stages. All the studies show a very modest effect of these particular stem cells of about 2 BBB points beyond that of cyclosporin which is used to prevent rejection. Not so good. There is no evidence that lithium promotes stem cell survival in the injured cord. The Wu paper examined lithium effects on stem cell proliferation when placed into the normal spinal cord only. The second Wu paper saw no effect of lithium alone on regeneration. There was only one additonal paper on this subject which was carried out only in vitro. All of the papers are in low impact journals. This does not give me much hope at all. I wish you only the best Christopher if you should decide you want this ucbc/lithium injection. Perhaps the decompression and intense rehab would be helpful. I’m fearful this concoction will not be quite what you are looking for in regards to actual regeneration or plasticity.
So when Wise asks for a dollar a day because he promises you will walk very very soon and people couldn’t tell you had an sci I think that is so much worse
bob
And, let’s not forget Wise told you that if you don’t support him, he could do research in other areas. Scare Tactics!!!!!!!!!!!! I think Dr. Young tried so hard to convince us to obey him and do whatever he asked for, knowing we are desperate, Finally some are seeing through his tactics, and they are so much worse then what some say about Rick Hansen. Hopefully when a good therapy comes along Rick will be there to help. BTW at Rutgers where Wise is situated there is not one wheelchair sport! With 60,000 students how could that be?????????????????
bob
Paolo! Did I answer your question? We shouldn’t have to put up with researchers like Wise Young that deserve attacks. They should be stripped of their right to do research and canvass us! for funding.
Paolo Cipolla
Bob, forget about Wise, he is out of the game now, but Rick Hansen is still in a position of power and he could still make a difference as he can control many millions per year and he has access to media and politician who do what he saies.
That is why I am spending some time questioning what Rick Hansen is doing.
Paolo
Winnie
Notice Bob refuses to answer your REPEATED question Paolo! (He’s worse than the Rick Hansen outfit)
.
He has no idea what to do to help anything towards a cure. NOTHING!!!
All he know how to do is whine, naysay and attack. He’s of no use in advancing towards a cure. It’s obvious you are wasting your breath. He’s clueless on any worthwhile ideas on how to help with advocacy efforts.
BOBS HOT AIR WON’T HELP A SINGLE THING. HE’S TALKED IN THE SAME CIRCLE FOR A MONTH. HE’S A WASTE OF OXYGEN… You won’t find any help from ole pitbull Bob. He doesn’t have a clue about what true advocacy is.
bob
Winnie stop name calling, I bet you are a Wise Young cult member, they call anyone who questions Wise a naysayer! I am with Paolo and agree with him, I think you are hung up with the fake hope Wise gives.
Winnie
Check again Cocaine Bob! (For the 100th time)
1. You STILL haven’t answered the Paolo question or anything about this entire article! Not even close!!!!!
2. You still haven’t stopped bitching and whining about everything under the sun that doesn’t even have anything to do with this entire discussion of RHI & RHF and Paolos article. Paolo already to told ya to forget about Wise. WE all did long ago. You’re the only one still snorting Wise dust. You simply do not know how to be an advocate, nor are you interested in getting RHF and RHI to help fund research. It’s as simple as that. You are too dense to listen to anything.
Your above post says it all. Worthless towards a cure. Waste of OXYGEN…
Winnie
Cocaine Bob, you state you are glad that Rick Hansen Foundation is not investing in cures and you see nothing wrong with him not pushing research forward. You don’t care that he stuffs his pockets full when he says he’s funding cure research when you know full well he is NOT!
You’ve mentioned carecure 9 times, methylprednisolone 4 times, Acorda 1, ucbc.lithium 1, Ampyra 2, Wise Young 11 times.
You refuse to answer Paolo’s repeated questio!. You don’t know how to help with getting RHF to help with researching for a cure to spinal cord injury. Why don’t you just go kiss Wise at an open house and be done with it. You’re boring the rest of us to death with your goofy rantings and whining. GET LOST COCAINE HEAD!!!
bob
Whatever you say Winnie
bob
But until you speak up aginst the snake oil Wise is selling there is no use in going againsr Hansen
Winnie
Sniveling will get you NOWHERE Bob! Stop your incessant whining and bitching. Get with the program and move on. All you want to do is stay mired in the Wise mud. You’re a worthless advocate. There will never be a cure if we depend on people like you to move us forward through the research, funding and legislative pieces. Stop crying in your beer.
Winnie
Bob, you do enough whining to make up for 1 million. Why don’t you start your own spinal cord injury forum. “How to hate and destroy any efforts towards curing spinal cord injury”. Somehow you are unable to learn anything or gleam any useful information. Do you wonder why nobody responds to you? Maybe put the cocaine in the trash and go find new projects, like global warming, the economy. It’s obvious you don’t wish to participate in any worthwhile cure movement. You only lurk on the outer fringe like a TROLL to bitch, whine and complain!
Charly
Check out this government website.
http://www.cra-arc.gc.ca/chrts-gvng/lstngs/menu-eng.html
By entering Rick Hansen, two charities will show up.
Check out the compensation earned by the 10 full time employees at the Rick Hansen Foundation.
abott
hansen is probably making millions but id say he’s not the only one its probably happening in many organizations. Stop giving and start saving.
jon maycock
with an sci for over 30 years ..25 of which ive been saying this guy is no better then a sunday morning teleavangelist preying on pwd’s hope for a cure to walk again!
Michelle Hewitt
I am responding to Jon Maycock’s comment above, Jon if you read this post I would love to hear from you. I have been trying to track you down as I have lost your contact information. Let me know as to the best way to reach you.
Mike Standford
Paralyzed rats walking
http://video.nationalgeographic.com/video/news/latest-news/paralyzed-rats-walk-vin/
daytime4ever
And he is wasting money see the financial statements on their website and also he recently donated his name for a 1.8 million tax receipt. Dont give your money to them.
http://www.pressdisplay.com/pressdisplay/viewer.aspx
http://www.rickhansen.com/Portals/0/WhoWeAre/RHF-March31-2012Signed.pdf
daytime4ever
but then again teh Hanson foundation is wasting money
http://www.pressdisplay.com/pressdisplay/viewer.aspx
and see the financials on their website .. shameful