StemCells&AtomBombs

A crank for cure!

2012-01-28T16:46:00.002+09:00

On 26 January, the Winnipeg Free Press carried my letter (third from the top) in both their online and print editions in response to their article 'Man in Motion still on a roll'. Also, don't forget the 13 January letter that I got printed in the Thunder Bay Chronicle Journal with all of your help.

I'm going to start getting the reputation as a crank if I don't stop. When I was a kid I used to read the paper and think that all the people who wrote 'letters to the editor' didn't have anything better to do with their time, and that yes, that they were cranks.

Well, when I think of all the money, $245 million, that the Rick Hansen Foundation has raised, and then think about their lack of spending on translational research for a cure, I don't mind being labelled a crank.

So, from now on, every time the media carries a news report about the Rick Hansen Relay rolling through towns and cities across Canada, I'm going to send a letter to the editor explaining the alternative view to Rick's work. That alternative view is that even though Rick is a good guy and has done a lot, twenty five years later he doesn't see that the place to be spending those millions is on research into the regeneration of the spinal cord. Well, until he gets it, I'm going to keep writing and asking you to write.

So pick up your keyboard and start writing, it's a great way to keep cure in the public eye, and it works.

I'm providing you with a list of major cities and dates for the rest of the relay along with a list of newspapers and email addresses to send your letters to.

Regina, Saskatchewan: 4-9 February. Send an email to the Regina Leader Post at letters@leaderpost.com.
Calgary, Alberta: 26-27 February. Send an email to the Calgary Herald at letters@calgaryherald.com
Edmonton, Alberta: 12-14 March. Send an email to the Edmonton Journal at letters@edmontonjournal.com
Vancouver, British Columbia: 21-22 May. Send an email to the Province at provletters@theprovince.com
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26 January 2012, Winnipeg Free Press (Print Edition)

All talk, no action

As your Jan. 22 article on the Rick Hansen Relay, Man in Motion still on a roll, mentions, the world has changed greatly. According to Hansen, "There is now hope in the laboratory that the newly injured will walk away or that there will even be a cure for spinal-cord injury."

But this hope for a cure, which is backed up by science and proven in animal studies, will not happen without funding.

A study of the Rick Hansen Foundation (RHF) and its research arm leaves one sorely unimpressed with their funding of translational research for central nervous system (CNS) regeneration, i.e., a cure for paralysis.

This concern is what led about 300 people from around the world to write to the RHF. Sadly, this question was never addressed in the foundation's answers.

The real story is not about how Hansen motivates people to believe, but rather why 25 years later Hansen does not believe that funding, not words or parades, is necessary for a cure.

I truly hate to make such a statement, but when Hansen's organization fails to openly answer such a question to his own constituents, one cannot help but doubt his own commitment to the cure that he raises funds for.

DENNIS TESOLAT

Osaka, Japan

One click to support the march against paralysis

2012-01-18T21:09:00.017+09:00

One click to Send a message of support to Joe and to major newspapers across the world to let them know what Joe Kals is doing.

Join the Facebook page 'Walking on the moon with Joe Kals'.

Many people don't know Joe Kals, and I didn't either until I read about him walking 1325km from north to south across France - and Joe can't walk. He has been a paraplegic for thirty years. His 1325km trek is being done with braces and crutches.

Joe is raising money and awareness for what many scientists already believe is possible, a cure for paralysis - so that you, and I, and Joe may one day walk across the beauty of France without braces and crutches.
Now that I've told you what Joe IS doing, let me tell you what he isn't doing.

He isn't raising funds and awareness for...
...a more inclusive world for those with SCI.
...a barrier free world so we can ride our chairs wherever we wish.

All admirable things, but Joe is doing this for ONE reason only, "So that human beings can live life without the consequences of spinal cord injury."

Watch our video and send this to your friends, colleagues, and family to let them know that a cure for spinal cord injury IS possible.

Make a donation to Joe by visiting his website at http://www.joekals.com/. The site is in French but click 'faire un don' in the upper left hand corner. All money raised will be donated to the French organization ALARME which is 100% dedicated to a cure for spinal cord injury.

Keeping a cure for spinal cord injury in the media

2012-01-14T13:24:00.002+09:00

I would like to thank you all of your for responding to my call for letters to the Chronicle Journal regarding their story about the Rick Hansen Relay.

In today's edition my letter was published and I will send another letter asking that they follow up on the story of the Rick Hansen Foundation's spending (or lack of spending) on funding for translational research on central nervous system regeneration, i.e., a cure for spinal cord injury.

We're starting to see the results of all asking and demanding together.

I will also follow up with them to see if they are interested in writing a story about a cure for spinal cord injury and why the Rick Hansen Foundation should be funding this.
*************************************
Published in the Chronicle Journal 'Letters to the Editor'

Spinal cord research

Friday, January 13, 2012

Thank you for your story regarding the Rick Hansen Relay (Rick Hansen Still Makes a Difference —CJ, Jan. 9). Hansen has done a lot to promote accessibility and acceptance for those of us living with spinal cord injury and paralysis.
As you may know, regeneration of the central nervous system (CNS), i.e. a cure for spinal cord injury, is very clearly on the horizon. A cure is one of Hansen’s stated goals.
Researchers from all over the world are working towards this goal and animal studies clearly show that the spinal cord can be regenerated, meaning that the paralyzed may someday walk again. One of the things that is holding this bold effort back is funding for research, specifically clinical trials.
As your article mentions, $245 million has been raised by Rick Hansen in the past 25 years and more money is being raised by this relay across Canada. This makes the Rick Hansen Foundation one of the biggest, most well-financed foundations dealing with spinal cord injury in the world.
Concerned about the lack of any specific mention regarding research funding for CNS regeneration, almost 300 people have written to the Rick Hansen Foundation asking for information about its spending in this area. Sadly, there has never been a clear answer to this question.
While I wish Rick Hansen success in this relay, I also ask that funding for CNS regeneration become the priority that he says it is.
Dennis Tesolat
(originally from Woodstock, Ont.)
Osaka, Japan

Send a letter to the Chronicle Journal about the Rick Hansen Foundation

2012-01-10T12:37:00.005+09:00

The Monday, 9 January edition of the Chronicle Journal (Thunder Bay) ran a story about the Rick Hansen Relay going through the Thunderbay, Ontario area (http://www.chroniclejournal.com/content/news/local/2012/01/09/rick-hansen-still-makes-difference). The goals of this relay, retracing the steps of the original Man in Motion tour wheeled by Rick Hansen across Canada twenty five years ago, is to raise both awareness and money.

The article goes on to state that in twenty five years $245 million dollars has been raised, but when 300 people wrote to the Rick Hansen Foundation asking how much of this money has been spent on a cure for spinal cord injury, we were greeted with a message that didn't answer the question.

You can find all our questions and answers at http://stemcellsandatombombs.blogspot.com/2011/09/q-with-rick-hansen-foundation.html

Send an email to the Chronicle Journal and ask them to follow the real news behind the Rick Hansen Foundation and what they are doing to achieve a cure for spinal cord injury.

Campaign closed. Please see

Keeping a cure for spinal cord injury in the media

From Italy with love

2012-01-08T13:17:00.005+09:00

Spinal Cord Injury MUST become curable! English Version

La Lesione Spinale deve diventare curabile Italian Version

¡¡¡ La Lesión de la Médula Espinal debe ser curable!!! Spanish Version

Sometimes I say stupid things...but not about cure

2012-01-05T22:05:00.000+09:00

I'm having one of those really good days today. When I say really good day, I don't mean that I can walk or anything. Good days for me is when I don't suffer from really high spasticity, the burning of pins and needles in the lower half of my body, and sharp pains that shoot through my hips. And this was today and that's when I said a really stupid thing.

I said, "God, if you just let everyday be like this, I'd be happy."

But you know what? It was a lie and it was stupid. I know it and God knows it. I want the full function of my body back. The same cure that many scientists believe possible and that animal studies show is a real.

Let's face it. The second I got rid of the pain and spasticity which can be done with some drugs, I'd want my bladder, bowel, and sexual function back, and after I was tired of just peeing normally, I'd want to walk. It's not selfish. It's not 'not being satisfied' with what you have. It's human nature to want progress, especially when science says it's possible.

We are often told of the great strides we have made in the world of paralysis. People with paralysis used to die quite early. The paralyzed had constant bladder infections which killed them. And these things have now been controlled.

But how many non-paralyzed people are happy just because they're not dead (except for my mother who would constantly tell me to be happy I was alive) or don't have a bladder infection?

These gains are not real gains if we’re alive but basically told to “shut up, sit down, and stop hoping for a cure”. It would be like telling the non-paralyzed to strive for nothing except what they currently have. Human society would come to a halt if everyone took that attitude.

It reminds me of surveys (stupidity #1, stupidity #2, the biggest stupidity) of quadriplegics and paraplegics that are rolled out by the opponents (yes, I use the word OPPONENT) of a cure every time we say we want to walk.

The polls says that most paraplegics put a priority on regaining sexual, bowel, and bladder function in that order, NOT walking. But guess what, as soon as we got those things, we're going to want to walk.

For high quadriplegics the poll says that the priority is on breathing without a tube, NOT hand function. But I promise you that the second they can breathe on their own they are no longer going to be satisfied with just this. They're going to want to move their fingers, pee on command, AND run a marathon.

These are examples of us being 'uppity';)

If you're not paralyzed and you're reading this, ask yourself; are you happy just because you can breathe?

These polls/studies, run by foundations for the paralyzed, WASTED money on them, and are telling scientists and us the paralyzed and non-paralyzed that we should settle. But that's not human nature.

The non-paralyzed can walk, so why were things that let us swim like the fish and fly like the birds invented?

The non-blind can see, so why were devices that let us see millions of kilometers into space invented?

And guess what?

The inventors were often told that they were crazy. That their inventions would never work.

And that's what every foundation for the paralyzed that tells us to be happy we're not dead is telling me and you. That a cure is impossible and those who work for a cure are crazy.

But it's not true and I have science on my side in this argument and it ain’t just me who says so.

I leave you with the words of Dr. Wise Young on a recent talk in New Zealand.

Dr. Young is the founding director of the W M Keck Center for Collaborative Neuroscience and a professor at Rutgers, the State University of New Jersey and is currently conducting clinical trials in spinal cord regeneration.

“It’s achievable not just within our lifetime, but within a few years. I believe we can fix a person enough so that someone who doesn’t know them wouldn’t know that that person has a spinal cord injury. To me that’s a cure!”

Skydiving? Why in the hell would I go skydiving?

2011-12-31T09:01:00.000+09:00

I hope that you and all of yours have a wonderful 2012. I would like to leave you with my favourite post which was written in November 2010 and to let you know that this is still exactly how I feel. Let's ring in 2012 with a new enthusiasm for a cure for paralysis.

Day one after the cure.

It's 7:00am and already the kids are buzzing about my head on the first floor. Singing Japanese songs that I am vaguely familiar with and then they begin to demand that I play with them. So I do.

Leaping from my futon, actually you don't leap from a futon on the floor (tatami to be exact), I roll over and get up. I shew the kids away and tell them to give me fifteen minutes. I go out the front door, get the paper, grab my cigarettes, and head to the washroom where I can read the paper and smoke for a few minutes in peace and quiet.

After I've had these few minutes, it's time to get breakfast going on the second floor. I ask the kids how they want their eggs done. "Hard boiled," answers one, "sunny-side-up," answers the other, but I tell them to decide ONE way to make their eggs and I'll agree to whatever. They engage in a quick round of janken (paper-scissors-rock), and Luca, the oldest, wins. Sunny-side-up it is.

Eggs, sausages (not real Italian sausages, but little tiny wiener type sausages from Japan), toast (not with olive oil and garlic, but with melted processed cheese), milk, and coffee for me. It's time to eat, but for Luca and Lio, it's time to fight about every egg, wiener, and slice of toast. I holler, and that calms them down. Finally we eat.

Next battle. It's Tuesday morning, during Obon holidays (that's when the dead come home in Japan and we have a week off to welcome them back), so I don't want to waste the day. "Brush your teeth, and get dressed." Again I win and they're off to the third floor to get ready. For me, it's five minutes of peace with which I run out to the balcony with the remainder of my coffee and newspaper, and cigarettes to grab a moment of peace.

"We're done." They come racing down the stairs and get ready to play in the street. I wonder if they'll now leave me alone, but looking at the deserted street below, I see that with no other kids, they'll soon be beckoning me, and I'll be happy.

All three of us now in the hot August street playing the Obama game. Interesting game it is. It used to be called the Osama (not the Bin Laden kind) game. Osama means king in Japanese and in this game you move up levels until you are finally the king. We named it the Obama game after the American elections.

We play for about one hour until we are all drenched in the Osaka sweat that goes along with the humidity and then all agree to go back into the house and the air conditioning. I hope that it's done, but my wife, who hasn't yet been out in the open heat, declares that we're going to Konan, a neighbourhood home centre.

Despite the fact that the heat is stifling, I'm quite happy to go. I want to get some wood to build shelves in the pantry, pick up some new plants, a new potter for my olive tree, and buy whatever else these places offer. Konan is great, but the bike ride to get there is HOT!

Finally there, we buy all the stuff we need, and don't need, and then head out to the parking lot for icecream. I wish that there was a beer for me, but there isn't, and even if there was, my wife is not going to let me drink beer at three o'clock in the afternoon.

We get home after the long bike ride up hyakuenbashi (one hundred yen bridge), and just when I'm ready to start relaxing and drink a beer regardless of whomever objects, we decide to go out yet again. This time forokonomiyaki which is like...I don't know what it's like. I ate okonomiyaki my first day in Japan and was told that it was a Japanese pizza. Well, it's not a pizza, it's more like a pancake full of chopped cabbage and slices of pork. Whatever, it's delicious and we eat it.

Oh, I forgot something. Before we go to eat okonomiyaki, my kids decide that it would be great to go to thesento (public bath) after we eat, so first we got to get our clothes and towels. I don't know if any of you know what a public bath is, but in Japan I go often.

It's basically a place with great big baths and showers along the walls. Great big tubs of steaming hot water, some inside and some outside, along with saunas and massage chairs. It's great and if you can learn to get naked with a bunch of guys, you'd soon learn to love it, as I did.

So after the okonomiyaki, me, Luca, and Lio are sitting up to our necks in hot steaming water outside. It's great, but I forgot the real reason for their insistence. The public bath I go to, Shintokuyu, has a lounge area with ice cream. So even though I want to stay and soak in the boiling water, I get out and satisfy my kids' desire for ice cream. I'm lucky though, because they sell both ice cream AND beer.

I'm beat but on the bike ride back home (about 2 minutes) I realize that I'm missing the most important thing for the end of a great day - MORE beer. We stop at the shop and pick up a few and head home.

We play upstairs in the kids' bedroom on the third floor. I tell them a story and then we say our prayers. 'Our Father', 'Hail Mary', and a host of other prayers said between English, Italian, Japanese, and even Latin. But it wouldn't have mattered if I had said them in Swahili, they're both asleep.

Now, I go back down to the first floor, it's too hot upstairs for me, roll out the futon, crack open a beer, and read myself to sleep. Tomorrow I've promised the kids that we'll go ZA BOOM which is a big swimming pool at an amusement park about thirty minutes from my house.

Sound boring? Not to me.

It's actually what I did the day I became paralyzed. That day, I only got to the futon part on the first floor before the pain started and I was rushed to the hospital, leaving my kids to be worried about their father AND why they weren't going to ZA BOOM.

For me, the first day that I get back my freedom, I wish to relive the last day without the pain that started this all (and hopefully without the cigarettes). Then I want to finish up my Obon holidays and head back to teaching and the union, and do it standing.

That's all.

I remember my first session of rehab three days after my operation. The physiotherapist, who was a really nice guy, told me about how people in wheelchairs climb mountains, go scuba diving, parachuting, and travel all over the world.

I thought to myself, "This guy is crazy." He was talking about my new enjoyable life in the chair. Why in the hell would I want to go scuba diving or parachuting from my chair? I never did these things before I got paralyzed, so why would I want to do these things now? I would much rather have had a discussion about new cures that are being researched for spinal cord injury. Instead I got the "life in the chair" talk.

Maybe it's about validating yourself or feeling alive; that you can do these things even if your are in the chair. But I don't need these things to validate that I am alive. I have pain and pins and needles that remind me that I'm alive. I'm not criticizing those who do do these things. Maybe they like it. Maybe they used to do it. Maybe they started doing it after they were paralyzed.

All I'm saying is that I would rather spend my time trying to make the cure a reality rather than ski down a mountain in my chair. I don't need amusements, because life in the chair is not amusing.

When they tell me that there is no hope whatsoever. When all the research shows that curing spinal cord injury is impossible, I might then decide that scuba diving is something that I really should get in to.

Cats eating mice at Geron

2011-12-12T19:36:00.001+09:00

This blog post has taken me a long long time to write. One reason was of course my operation which knocked the wind out of me, but after hearing that Geron (the first company in America to win clinical trials using embryonic stem cells to treat spinal cord injury) was abandoning its clinical trials, I had to do a lot of rethinking about the best way forward to a cure. Oddly enough, it brought me back to a story called 'Mouseland'. Here I go.

The headline in the 21 November 2011 Los Angeles Times explains the whole story best:

Economics, not science, thwarts embryonic stem cell therapy

But I can sum up the story even easier - cats eat mice.

I was informed about this story by a reader who felt devastated by what she felt as "Geron abandoning me and others for profits." What made it worse was that it wasn't abandoned because of concerns of the science or the safety, but simply because Geron did not see any potential to make money off these cells to treat spinal cord injury in the near future. Fair enough, cats don't chase mice for fun, they do it for food.

But oddly enough, I didn't feel let down by Geron. Me criticizing Geron for this would really be like criticizing cats for eating mice. Geron is a private company and the goal of a private company is to generate profits for their shareholders. If they can do it by curing paralysis that's great, but in Geron's case they decided that they could make more, and more quickly, with cancer drugs (more people have cancer than spinal cord injuries). Let me also be clear, I don't think that the people at Geron are bad, but in the end, they did what cats do, they ate the mice (in fact they first cured mice of spinal cord injuries), meaning that they did what was natural - they moved into a better position to make money.

I'll admit it though, in the absence of understanding how we can move research along to cure paralysis without depending on private profit, I secretly cheered for the cats at Geron against my better judgment and against myself, one of the mice.

Well, their abandonment of these trials made me have to sit, think, and search for another way forward that is more in line with my own thinking. And then I found an article that articulated what I always knew and felt.

The Horrifying Hidden Story Behind Drug Company Profits (Huffington Post: 4 August 2009)

While the story is not about curing paralysis it is about how the patent system stops people in the poorest countries from getting medicines they need simply because of profit and why we aren't always best served by profit. Furthermore, it articulated something that I had always thought about the role of pharmaceutical companies in making new medicines.

"Our governments have chosen, over decades, to allow a strange system for developing medicines to build up. Most of the work carried out by scientists to bring a drug to your local pharmacist -- and into your lungs, or stomach, or bowels -- is done in government-funded university labs, paid for by your taxes. Drug companies usually come in late in the process of development, and pay for part of the expensive but largely uncreative final stages, like buying some of the chemicals and trials that are needed. In return, they own the exclusive rights to manufacture and profit from the resulting medicine for years. Nobody else can make it."

But still there was no answer in regards to how to change the current system of creating new medicines or therapies.

"But a detailed study by Dr Marcia Angell,the former editor of the prestigious New England Journal of Medicine, says that only 14 percent of their budgets go on developing drugs -- usually at the uncreative final part of the drug-trail. The rest goes on marketing and profits. And even with that puny 14 percent, drug companies squander a fortune developing "me-too" drugs -- medicines that do exactly the same job as a drug that already exists, but has one molecule different, so they can take out a new patent, and receive another avalanche of profits."

"As a result, the US Government Accountability Office says that far from being a font of innovation, the drug market has become "stagnant." They spend virtually nothing on the diseases that kill the most human beings, like malaria, because the victims are poor, so there's hardly any profit to be sucked out."

This did get me thinking about spinal cord injury. The market to cure malaria is huge, but the victims are poor so they don't get a drug to cure malaria because no one will make much money of it. In terms of paralysis, even though it also exists in 'rich countries', the market is too small to warrant massive investment.

But these criticisms didn't give me a new understanding or show me away to make sure that I could back the mice to cure the mice. Luckily I kept reading and found what I was looking for at the end.

Today I will leave the story at that, but have a look at the end of the article and I'll continue very soon as I'm excited about this very interesting idea as it has the potential to unite people from many different disease groups with regular people who pay taxes into a very strong group of people who could make a change that affects my life and my pocketbook.

Go mice!

Enough With the Rats!

2011-11-11T09:25:00.006+09:00

by Unite2FightParalysis
visit their blog at http://unite2fightparalysis.wordpress.com/

Working 2 Walk in Rockville was such a rich experience, I’ve had trouble deciding what to write about first. For today, let’s look at the message of our international advocates, all of whom traveled great distances to meet the scientists at W2W and express an urgency to make the leap from working on the spinal cords of lab rats to those of humans.

Martin Codyre (Ireland), Harvey Sihota (United Kingdom), and Dennis Tesolat (via Skype from Japan) spoke frankly about what it’s like to sit in a chair and observe:

Promising therapies such as cethrin and hypothermia that never make it to Phase III trials because of financial and regulatory hurdles;
Large SCI organizations that use the word “cure” in their promotional materials, but spend relatively little on restorative research;
The lack of research attention paid to chronic injuries, when arguably that population has the greatest need and potentially the greatest return on investment;
A perceived lack of collaboration, commitment, and coordination amongst the stakeholders to push a product to market.

Of course it’s our goal at Working 2 Walk to motivate members of the SCI community to move beyond observation and into action, which became the focus of a lively exchange between the panel members and audience.

A few of the more powerful comments:

“I think that what we’re going to do is take up our own part of the job. What is it? If you’re paralyzed and you have a part time job, your full time job is moving this along. If you’re paralyzed and you have a full time job, your part time job is moving this along.”

“A lot of us are speaking about hope, and that’s awesome, but we need to talk about action. I heard Jerry Silver say ‘I’m fine.’ Well, I’m happy that you are fine, but I am not fine. I’m not here to criticize, but I want to know how we get well. Let’s start with a goal: we want clinical trials in two years and manage toward it.”

“We could be much further along toward a cure, which I define as getting out of the chair. We can’t be happy just with bowel and bladder, not that we all don’t want that. We have to take what we can in the short term but look toward the long. We need to push for a big change, or we’re all going to die in these chairs.”

Working 2 Walk itself is an effective catalyst for change, bringing together scientists who in the presence of consumers may be more motivated to collaborate, building the knowledge base of advocates, and creating unique networking opportunities. But more needs to be done on a year-round basis.

Translation of therapies from the laboratory to the clinic is often called “The Valley of Death”. In a recent Science Daily article about stem cell treatments for spinal cord injuries, Dr. Michael Fehlings noted that “At this time, a strong patient advocacy base would likely help provide momentum to help translate current research into clinical applications.” Let’s get going.

Nothing a good game of basketball can't cure

2011-11-07T11:46:00.001+09:00

It was bound to happen again. Why I didn't think it would happen again is beyond me.

I have to remember in these instances that people are just trying to be helpful, but sometimes I forget and instead of trying to use the situation to teach a point, a smart-ass comment pops out instead.

For those of you who have been following my blog you know that I am in the hospital following an operation to collapse a cyst (syrinx) in my spinal cord (syringomyelia). After the operation I had a few days rest and then started rehab and met my occupational therapist.

After introductions our short conversation went like this.

Therapist: What do you think about basketball?

Me: Do you mean getting drunk while watching it on TV?

Therapist: (No answer)

Well, I'm happy that he has forgiven my quick tongue, but now I have to figure out away to teach him about our battle for a cure of paralysis, and that's more difficult.

Before I go any further, I want to make a few things clear. One, I am not against basketball. Two, I do understand how sports can play a positive role in reintegration and self esteem for some paralyzed people, and three, I'm not against a healthy lifestyle and exercise for anyone. I am simply against the concept that says wheelchair sports can cure the broken lives caused by paralysis. I'm sure that if Marx had been paralyzed he would have called wheelchair basketball 'the opiate of the paralyzed'.

I don't blame the rehab therapists for not understanding the cure for spinal cord injuries. After speaking to people across the world I'm pretty sure that this basketball speech is in the 'International Rehab Therapists Manual'. It's up to us to change the way they think so that when they talk about basketball they mention it in the same breath as 'cure' and how we have to keep our bodies and minds in good shape so that when there is a cure we'll be ready.

To this end I would like to republish a leaflet that was prepared for the ISCoS (International Spinal Cord Society) last June. You can print out the piece below (here is the PDF) and give it to your rehab therapists, doctors, nurses, etc.

What can a lealfet do to push the cure forward?

After having rewatched Cry Freedom about Steven Biko and the 'black consciousness' movement I realized that what we are missing is 'cure consciousness'. Until we and health professionals start believing science, that CNS (central nervous system) regeneration, i.e., a cure for spinal cord injury, is possible, we will be stuck in teaching the paralyzed that the only thing they got coming to them is a rousing game of basketball.

So hand out the lealflet and have a little talk with your health care profession, and don’t forget to hold your tongue even if you think you got a good one-liner like I had.

As science stands on the brink of a cure for paralysis, we ask members of the International Spinal Cord Society (ISCoS) and American Spinal Injury Association (ASIA) to refocus, realign, and redouble your efforts to help advance promising science to the bedside.

At a time when there has never been more hope, we remind you that together it is our responsibility to keep abreast of the status of basic, translational, and clinical scientific initiatives across the globe.

As advocates, we recognize that clinicians are an important part of the chain for curing paralysis and ask each of you to educate your patients with the facts about the compelling progress that is being made in the field of spinal cord injury research. This is not spreading false hope, it is fact.

The current state of science dictates that we work together to bring promising therapies from the lab to the bedside. no more should a consultant, neurologist or neurosurgeon need to utter the words "you will never walk again."

Let's work together to educate patients on what science can realistically mean for them and future generations.

With all our might, we will support those of you who will partner with us to advance a cure. Strive to cure spinal cord injuries with the same zest as you have cared for us.

Right now, together we can!

Also available in the following languages:

Willing away paralysis. How about syringomyelia?

2011-10-23T14:22:00.000+09:00

When I was first paralyzed, a friend relayed a conversation that he had overheard about me. I don't remember it word by word, but basically it was that people like me don't remain paralyzed, we walk.

Syringomyelia. See the thin light grey shape inside
the spinal cord, placed at centre in the bottom
half of the above image.

Now, I don't know if he was commenting on my willpower or my stubbornness, but either way I took it as a nice compliment even though I thought it was completely crazy.

We all hear the stories about people who willed away their paralysis. I don't want to say these stories are untrue or that these people are frauds, but often there is a very clear medical reason why some people recover from an injured spinal cord and the vast majority don't. It has a lot less to do with willpower than with what type of injury the person suffered, but because most regular folks aren't experts in spinal cord injury they think that willpower must be one answer.

I think that this thinking also spills over into how people view a successful adjustment to a life with paralysis. People that don't have just enough willpower to cure themselves, but have enough willpower to lead a happy life in the chair. Again, because the media hypes the stories about paralyzed people's success stories, those that aren't so successful end up being thought of as weak.

I guess this comes from people's basic understanding of paralysis, especially paraplegia (just the legs paralyzed). People tend to think of it as an injury that just knocks out your legs and therefore with a strong upper body (and willpower) it should be easy to get used to and lead a normal life. Again, if you can't, it's because of a lack of willpower.

People never think about, because it's never talked about, things like severe neuropathic pain, or pressure sores, or the hundreds of other secondary issues involved with paralysis. In the case of paraplegia, people tend to think that it's just the legs that don't work.

I've got a a new one that people have never thought of. Syringomyelia and I've got it. Basically this is when the spinal fluid enters the spinal cord and causes like a balloon filled with spinal fluid to grow inside the cord which eventually destroys the spinal cord. It often gets longer and goes up the spinal cord leading to sensory dysfunction, pain, weakness, and could lead to quadrapalegia as it gets longer and knocks out the arms.

How did I get this? Lack of willpower? Lack of adjustment to a life of paralysis? No, none of these things matter as you can't will it away or use your willpower to adjust.

No one knows the exact reason why or how it forms, but it forms due to a reaction to a spinal cord injury or hemmorage (which is what I had).

So please keep in mind when you read stories about those leading very successful lives despite their chairs, that not all injuries are the same and not all people suffer secondary complications from their injuries (even though most do and only a small minority lead the lives that you read about in the newspaper).

As of 26 October I'll be writing this blog from the hospital and I get ready for my operation on the 28th and then get moved to a rehab hospital. I'll be letting the surgeon use his skill to get rid of the syringomyelia and then use my skill to keep fighting for a cure for paralysis so things like syringomyelia and all the other complications of spinal cord injury get put into the history books.

Of course you need willpower to not give up hope, but I'm sorry to report, willpower doesn't cure paralysis..

One or two clicks to cure paralysis

2011-10-12T23:10:00.003+09:00

A very important bill, The Regenerative Medicine Promotion Act of 2011, (http://stemcellsandatombombs.blogspot.com/p/regenerative-medicine-promotion-act.html for more information about this bill) has been introduced to the US House of Representatives and now the aim is to also get this bill introduced in the American Senate. Remember, regenerative medicine is the stuff that will get people out of their chairs and walking again!

To do this the bill must have sponsors so it can be introduced. This bill already has one sponsor, Democratic Senator Barbara Boxer, but we need a Republican senator to also sponsor it or it won't get anywhere.

To this end Unite2Fight Paralysis (a grassroots organization dedicated to finding a cure for paralysis - see www.U2FP.org) is sponsoring a face to face lobbying session in Washington on 18 October as part of their Working2Walk conference.

We can't all be there to help in their efforts but you too can help inspire some Republican senators to sponsor this bill by sending the email below. To let them know that people inside and outside of America are looking to the USA for leadership in this very important matter - curing paralysis and a host of other conditions and diseases.

Please send a message to the following US Senators.

The Honorable Mark Kirk (Illinois)
The Honorable Scott Brown (Massachusetts)
The Honorable Susan Collins (Maine)
The Honorable Olympia Snowe (Maine)

This campaign has ended.

Don't miss Working 2 Walk 2011

2011-10-01T02:18:00.005+09:00

www.U2FP.org

Plan to join us this fall as we return to the Washington, DC area. The past year has been an exciting time in the world of spinal cord injury research as therapies move from the lab into clinical trials. Working 2 Walk brings you the opportunity to:

Meet the scientists who are leading the effort to find curative therapies;
Hear first-hand the latest news on the research front;
Learn about currently available modalities that will help you maintain a healthy lifestyle and maximize function following spinal cord injury;
Find out what you can do to accelerate progress toward cures;
Network with your peers in a dynamic environment.

For all those interested in a cure for paralysis, don't miss it! I can't be there in person, but I'll be there somehow.

Not Just The News picks up our campaign

2011-09-28T15:46:00.001+09:00

It was wonderful to see that our campaign to get answers from the Rick Hansen Foundation has been picked up by a social media news site in Prince Edward Island, Canada.

Like I've always said, when we work together - we'll get results.

//////////////////////////////////////////////////////

What’s wrong with the Rick Hansen Foundation?

http://njnnetwork.com/2011/09/whats-wrong-with-the-rick-hansen-foundation/#comment-18469

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.

continue reading...

Q&A with the Rick Hansen Foundation

2011-09-27T09:31:00.001+09:00

Question 1.
Please answer my very important question
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF)

Cc.
Mr. Rick Hansen and Mr. Lyall Knott, Co Chairs, RHF Board of Directors
Mr. Jim Watson, Secretary, RHF Board of Directors
Mr. George Gaffney, Treasurer, RHF Board of Directors

RHF Board of Directors
Mr. Matthew Bosrock
Ms. Sally Douglas
Mr. Perry Goldsmith
Ms. Amanda Hansen
Mr. Jonathan Kallner
Mr. Tod Leiweke
Ms. Sue Paish
Mr. Peter Ufford
Ms. Christine Day

Mr. Bill Barrable, CEO, Rick Hansen Institute,
Dr. Tom Oxland, Interim Director, ICORD

On the 25th anniversary of Rick's heroic journey to cure paralysis I would like to congratulate you on your recent appointment as CEO of the Rick Hansen Foundation. If Rick believed, twenty five years ago, that a cure for paralysis was possible, RHF should feel that a cure is now an inevitability in light of recent scientific progress.

As a person concerned about spinal cord injury (SCI) I believe that the appointment of a new CEO at such an important juncture allows RHF to accelerate its work towards a cure. As we all know a cure will not come from hope alone but through hard work, perserverence and the support of science.

However, I am concerned that RHF may have lost some focus in the pursuit of a cure for spinal cord injury. My concern stems from information posted on both the Rick Hansen Institute and ICORD (both established and funded by RHF) websites. Looking at this information I do not see central nervous system (CNS) regeneration as the top priority of either of these two groups.

Therefore 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.

I realize that care and quality of life work is important for those living with SCI, but a cure that is showing itself to be within our reach is just as important and is actually the ultimate form of care/quality of life.

Thank you for reading this and I hope for an answer to my question in the very near future.

Answer 1

Dear Dennis,

Thank you for your inquiry. We appreciate the opportunity to share further details with you about the nature of our work.

The Rick Hansen Foundation (RHF) focuses its efforts on improving the daily lives of people with disabilities by creating more accessible and inclusive communities, and accelerating the search for a cure for spinal cord injury (SCI).

As you know, SCI research is highly complex. The continuum of care – from point of injury, to rehabilitation and recovery – is extensive, and requires both financial and practical support at all stages to ensure people with SCI can continue to live as productive citizens in an inclusive and accessible society.

Since 1988, RHF has generated $200M for SCI research and quality of life programs while helping to improve the prognosis for newly injured individuals, by directing funds to major research grants and charitable programs.

Among the Foundation’s commitments to a cure for SCI, is the creation of the Rick Hansen Institute <http://www.rickhanseninstitute.org/> (RHI). This independent Institute is a Canada-wide collaboration dedicated to accelerating progress towards a cure and improving the quality of life for people who live with SCI and related-disabilities. RHI invests in and supports the most promising work in SCI translational research and the adoption of best practices, including supporting experts working in the promising field of stem cell research. They are also working towards solutions to improve the day-to-day quality of life for those living with SCI, hence their short term focus on reducing the severity of secondary complications associated with SCI.

Leveraging a global network of like-minded individuals and organizations, RHI is doing everything possible within their means to help create a world without paralysis after spinal cord injury. Given their relative size and reach, and the work of others in basic and primary research around the world, their focus is on efforts to accelerate the translation of discoveries and best practices into improved treatments and quality of life for individuals with SCI.

We hope this information clarifies the work of the Rick Hansen Foundation and the Rick Hansen Institute. Together, we form one component within a very large community of organizations around the world, dedicated to improving the quality of life of people with disabilities. Our long-term vision is a cure for paralysis after SCI and our continued dedication to this vision is anchored in the ongoing advances happening in the field of SCI research.

We encourage you and others interested to visit our websites at www.rickhansen.com<http://www.rickhansen.com> and www.rickhanseninstitute.org<http://www.rickhanseninstitute.org> to learn more about how we are working towards our common goals.

Regards,

The Rick Hansen Foundation and The Rick Hansen Institute

Question 2
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation

Subject: Please respond

Original email: http://bit.ly/pMBjhj

Message: There was no answer to the question regarding what percentage of funds raised by Rick Hansen Foundation is being spent on a cure for spinal cord injury. I await an answer to this question. In case you didn’t see the original email, see above.

Answer 2
Dear Dennis
Rick Hansen started a journey 25 years ago with drive, determination and a dream to make the world more accessible by raising awareness of the potential of people with disabilities, and to find a cure for spinal cord injury (SCI). In 1985, fuelled by these two big dreams, Rick began his Man In Motion World Tour, a journey that spanned more than 40,000 km through 34 countries and took two years to complete.
The generosity of people who were inspired by Rick’s dream resulted in over $26M in donations. These funds helped establish and sustain the work of the Rick Hansen Foundation (RHF), which today, has leveraged those funds to over $245M, and continues to honour and focus on supporting the original dreams of Rick’s Tour creating an accessible and inclusive society and supporting the search for a cure.
Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives, through the support of charitable programs and research grants.
RHF initially granted millions over the years to fund basic science research through fellowships, science leadership and chairs, grants, infrastructure and studentships. Today RHF focuses its granting and funding on a collaborative model that brings the SCI research community together to focus on newly, acutely and chronically injured individuals, through the Rick Hansen Institute (RHI). RHI is the Foundation’s strategic innovation that is creating a Global Clinical Trials Network, connecting 70 SCI-related sites from around the world. These sites will be able to conduct Multi-Center Clinical Trials using research discoveries, including CNS, from anywhere on the planet to apply to people with SCI to accelerate progress towards a cure.
We trust this information clarifies our response and helps you understand the nature of our work. For further information, please visit our website atwww.rickhansen.com.

Regards,
Rick Hansen Foundation

Question 3

Answer 3
August 18, 2011

Re: We would like to propose a discussion

Dear Carles, Paolo, Arcangela, Dennis and Barb,

We are responding to your follow-up questions in writing, to ensure our position is clearly understood.
As we have stated several times, the work of the Rick Hansen Foundation supports the same vision Rick expressed when he set out on his Man In Motion World Tour – to raise awareness of the potential of people with disabilities by creating accessible and inclusive communities, and supporting research for a cure.
Over the last 25 years, Rick and the Foundation have provided a strong voice and a clear vision in both these areas. The Foundation has brought diverse groups together to articulate a common goal, applied its leadership to develop the strategy and resources to achieve that goal, and encouraged these initiatives to become independent so that new ideas can be conceived and launched. Progress continues to be made and we believe that ongoing investment to the areas we have previously outlined will lead to greater outcomes in the future for people with SCI.
A list of the programs and organizations we have funded in the 2010-2011 fiscal year are listed in our annual report, which will be available next week on our enhanced website. The information included in our annual report and T3010 is shared with government, corporate funding partners, major donors, and the public.
As is the case with numerous charitable foundations, applications for funding are reviewed by a committee and recommendations are put forward to the Board of Directors for approval. Applications must be received from organizations who are qualified beneficiaries under Canadian Revenue Agency Charitable rules and regulations. At present, all funds for the fiscal year ending March 31, 2012 have been committed, and will be reflected in our 2012 fiscal year annual report released in the spring of 2012.
We trust we have answered your questions on this topic and as fully transparent and prudent stewards of the funds entrusted to us, we assure you that any information that we can provide through correspondence is available on rickhansen.com.

Sincerely,
Art Reitmayer

Question 4
His Excellency The Right Honourable David Johnston, Governor General of Canada,
As the patron of the Rick Hansen Relay starting on 24 August in Newfoundland, Canada I am writing you to wish the Rick Hansen team success in this endeavour.

The work that Rick Hansen, with the backing of the Canadian government, has done for those living with paralysis in terms of accessible cities and quality of life programmes has been very appreciated. I also share Mr. Hansen's dream of a 'world without paralysis after spinal cord injury' and believe that the new advances being made in the field of central nervous system (CNS) regeneration will bring us this dream.

To this end, many people interested in a cure for paralysis have been writing to the Rick Hansen Foundation regarding it's financial commitment to CNS regeneration, but have not been able to receive a satisfactory response.

You can see the questions and answers at http://bit.ly/nPCkr5.

Undertsanding that this may not be something that can be easily answered by email, a representaitive group from Canada, Italy, Japan, and Spain recently wrote to RHF to ask for a meeting regarding the issues raised in the emails. I am sorry to report that even though a response was received, the issue of a discussion was ignored.

I ask you as the Governor General of Canada and patron of the Rick Hansen Relay to relay my desire for real dialogue with RHF in regards to the urgency of a cure for paralysis and how we in Canada and the international community can better cooperate to achieve Rick Hansens's dream. I look forward to your response and any help that you may offer.

We really want dialogue with the Rick Hansen Foundation

2011-08-24T18:11:00.000+09:00

I'm writing to the Governor General, and I'll tell you why in a second.

24 August is the start of the Rick Hansen Relay which marks the twenty-fifth anniversary of his famous world tour to raise awareness and funds to improve the quality of life for those living with spinal cord injuries (SCI) and to find a cure for paralysis. This relay which will transverse Canada starting in Newfoundland and ending on 22 May in Vancouver, British Columbia should also commemorate the great work that Rick Hansen has done for all of us with SCI.

But I must admit that I am disappointed by the Rick Hansen Foundation's (RHF) unwillingness to have dialogue with those living with SCI.

Many people wrote to the RHF's new CEO, Art Reitmayer, to ask for information on the foundation's spending on central nervous system (CNS) regeneration, i.e., a cure for spinal cord injury, but we didn't get an answer to the question. We did this twice hoping to get some answer and when our questions couldn't be answered, five of us even wrote asking for a skype meeting to discuss our questions 'in person'. We got an email back, but the request for dialogue was just ignored. You can see all the correspondence here.

I have to admit that at first I thought a skype meeting was a little nuts, but then I saw a lot of other groups who have real dialogue with people using today's technology. In fact, I got two such emails just this morning. Both were from the California Institute for Regenerative Medicine. One was for a webinar on scaffolding (like building a bridge of the lesion in the spinal cord), and the other one was for meeting the new chairman of the institute which you can do by telephone. This is dialogue and it's easy because of the great advances in telecommunications.

So, I think it's time to write to the Governor General of Canada to see if he can help us. The Governor General is the patron of the Rick Hansen Relay and maybe with his intervention the Rick Hansen Foundation can find a way to have dialogue. We don't wish to just sit, cheer, and donate. We want real dialogue leading to real information, because we all share Rick Hansen's internationalism to build 'a world without paralysis after spinal cord injury.'

A skype meeting, a real time Q&A using email, a webinar, anything that is dialogue is fine with me.

Please fill out this short email and it will be sent directly to His Excellency, The Right Honourable David Johnston, Governor General of Canada.

If you can't see the email below, please click here.

Love is better than anger

2011-08-23T11:50:00.003+09:00

Thanks Jack

My friends, love is better than anger.
Hope is better than fear.
Optimism is better than despair.
So let us be loving, hopeful and optimistic.
And we’ll change the world. ~Jack Layton~

The paralyzed are standing up

2011-08-13T10:35:00.000+09:00

At 3:30PM on Friday, 12 August 2011 (Vancouver time) a letter was sent to the Rick Hansen Foundation (RHF) from five spinal cord injured people in Canada, Italy, Japan, and Spain.

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.

////////////////////////////////////////////////////////////////////////////////////////////////////////////////////

An answer from Rick Hansen Foundation

2011-08-07T16:53:00.001+09:00

We finally got an answer from the Rick Hansen Foundation (RHF) in regards to our question about the percentage of funds spent/being spent on central nervous system (CNS) regeneration, i.e., a cure for spinal cord injury.

Now, it wasn't the exact answer that we were looking for as their number, 81%, was the spending on both cure and quality of life projects (in my opinion, both important as long as they are evenly spent on), but at least we got a number this time.

And now it's time to examine the answer and see what we have learned from this.
1. We have learned that persistence counts for something. If everyone had given up after the first email we wouldn't have had any number to work with. We know that RHF responds and that your emails made them respond. Next time someone tells you that your efforts are meaningless, tell them it's not true.

Now some quotes from the letter and my thoughts.
2. "Rick Hansen started a journey 25 years ago with drive, determination and a dream to make the world more accessible by raising awareness of the potential of people with disabilities, and to find a cure for spinal cord injury (SCI)."
So when people say that Rick never started his journey to cure SCI, you can tell them that the Rick Hansen Foundation was set up with a goal to cure paralysis from day one.

3. "Rick began his Man In Motion World Tour, a journey that spanned more than 40,000 km through 34 countries and took two years to complete. The generosity of people who were inspired by Rick’s dream resulted in over $26M in donations."
Rick Hansen should be applauded for his international outlook. When people tell you have no right to question this foundation because you're not Canadian, you can tell them that you look at a cure for spinal cord injury with the same internationalism that Rick has.

4. "...leveraged those funds to over $245M, and continues to honour and focus on supporting the original dreams of Rick’s Tour creating an accessible and inclusive society and supporting the search for a cure."
Rick's goal is to cure paralysis and they have the money for it. It's our job in the international spinal cord injured community to make sure that money goes to Rick's dream of a cure for paralysis.

5. "Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives, through the support of charitable programs and research grants."
This is the number (well not exactly) that you demanded to know. Now we need to find out a little more deeply exactly how much goes to regeneration, how it's decided, and how we can help in securing Rick's dream.

6. "RHI is the Foundation’s strategic innovation that is creating a Global Clinical Trials Network, connecting 70 SCI-related sites from around the world. These sites will be able to conduct Multi-Center Clinical Trials using research discoveries, including CNS, from anywhere on the planet to apply to people with SCI to accelerate progress towards a cure."

Global and anywhere-on-the-planet is exactly how we need to understand a cure. Now we need to ask about how we can be part of Hansen's global movement. Not just to cheer and raise funds, but to help lead and make sure funds go to regeneration.

One person called your efforts "bitching and complaining", but I salute you for your perseverance. Remember, we're not going to win a cure for paralysis tomorrow but our input in the meantime is what will make a cure come earlier. Don't leave it to the scientists, the foundations, and the corporations; we must take a positive role in all of this.

Now it's time to talk directly with the Rick Hansen Foundation...

To this end, myself and a few others who played an important role in getting people to send emails to RHF in the first place will send a letter to the CEO, Mr. Art Reitmayer to ask for talks by skype.
The point of the talks will be as follows.
1. To find out 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 abandonded due to financing.

We will let you know ALL updates.

Here's the answer that was sent by the Rick Hansen Foundation.Dear Dennis

Rick Hansen started a journey 25 years ago with drive, determination and a dream to make the world more accessible by raising awareness of the potential of people with disabilities, and to find a cure for spinal cord injury (SCI). In 1985, fuelled by these two big dreams, Rick began his Man In Motion World Tour, a journey that spanned more than 40,000 km through 34 countries and took two years to complete.

The generosity of people who were inspired by Rick’s dream resulted in over $26M in donations. These funds helped establish and sustain the work of the Rick Hansen Foundation (RHF), which today, has leveraged those funds to over $245M, and continues to honour and focus on supporting the original dreams of Rick’s Tour creating an accessible and inclusive society and supporting the search for a cure.

Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives, through the support of charitable programs and research grants.

RHF initially granted millions over the years to fund basic science research through fellowships, science leadership and chairs, grants, infrastructure and studentships. Today RHF focuses its granting and funding on a collaborative model that brings the SCI research community together to focus on newly, acutely and chronically injured individuals, through the Rick Hansen Institute (RHI). RHI is the Foundation’s strategic innovation that is creating a Global Clinical Trials Network, connecting 70 SCI-related sites from around the world. These sites will be able to conduct Multi-Center Clinical Trials using research discoveries, including CNS, from anywhere on the planet to apply to people with SCI to accelerate progress towards a cure.

We trust this information clarifies our response and helps you understand the nature of our work. For further information, please visit our website atwww.rickhansen.com.

Regards,

Rick Hansen Foundation

Second Question to the Rick Hansen Foundation

2011-07-31T20:22:00.001+09:00

Thank you for sending your email to the Rick Hansen Foundation.

Unfortunately the response they sent you does not include a figure for the percentage of funds being spent on a cure for spinal cord injury.

Rick Hansen has traveled all over the world talking about spinal cord injury, so therefore you have a right to know the answer to this question.

I know it’s not enough, but at the moment, I urge you to write back with a very simple question to show them that you are not happy with their response.

This campaign has now ended. Please stay tuned for the third part of the campaign.

To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation

Subject: Please respond

Original email: http://bit.ly/pMBjhj

Message: There was no answer to the question regarding what percentage of funds raised by Rick Hansen Foundation is being spent on a cure for spinal cord injury. I await an answer to this question. In case you didn’t see the original email, see above.

Can't get a straight answer from Rick Hansen Foundation!

2011-07-31T10:44:00.001+09:00

This week, paralyzed people from around the world sent a real simple request for information to Mr. Art Reitmayer, the CEO of the Rick Hansen Foundation (RHF). “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.” We got an answer to something, but not to our question.
The Question	The Answer
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF) On the 25th anniversary of Rick's heroic journey to cure paralysis I would like to congratulate you on your recent appointment as CEO of the Rick Hansen Foundation. If Rick believed, twenty five years ago, that a cure for paralysis was possible, RHF should feel that a cure is now an inevitability in light of recent scientific progress. As a person concerned about spinal cord injury (SCI) I believe that the appointment of a new CEO at such an important juncture allows RHF to accelerate its work towards a cure. As we all know a cure will not come from hope alone but through hard work, perseverance and the support of science. However, I am concerned that RHF may have lost some focus in the pursuit of a cure for spinal cord injury. My concern stems from information posted on both the Rick Hansen Institute and ICORD (both established and funded by RHF) websites. Looking at this information I do not see central nervous system (CNS) regeneration as the top priority of either of these two groups. Therefore 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. I realize that care and quality of life work is important for those living with SCI, but a cure that is showing itself to be within our reach is just as important and is actually the ultimate form of care/quality of life. Thank you for reading this and I hope for an answer to my question in the very near future. Dennis Tesolat	Dear Dennis, Thank you for your inquiry. We appreciate the opportunity to share further details with you about the nature of our work. The Rick Hansen Foundation (RHF) focuses its efforts on improving the daily lives of people with disabilities by creating more accessible and inclusive communities, and accelerating the search for a cure for spinal cord injury (SCI). As you know, SCI research is highly complex. The continuum of care – from point of injury, to rehabilitation and recovery – is extensive, and requires both financial and practical support at all stages to ensure people with SCI can continue to live as productive citizens in an inclusive and accessible society. Since 1988, RHF has generated $200M for SCI research and quality of life programs while helping to improve the prognosis for newly injured individuals, by directing funds to major research grants and charitable programs. Among the Foundation’s commitments to a cure for SCI, is the creation of the Rick Hansen Institute <http://www.rickhanseninstitute.org/> (RHI). This independent Institute is a Canada-wide collaboration dedicated to accelerating progress towards a cure and improving the quality of life for people who live with SCI and related-disabilities. RHI invests in and supports the most promising work in SCI translational research and the adoption of best practices, including supporting experts working in the promising field of stem cell research. They are also working towards solutions to improve the day-to-day quality of life for those living with SCI, hence their short term focus on reducing the severity of secondary complications associated with SCI. Leveraging a global network of like-minded individuals and organizations, RHI is doing everything possible within their means to help create a world without paralysis after spinal cord injury. Given their relative size and reach, and the work of others in basic and primary research around the world, their focus is on efforts to accelerate the translation of discoveries and best practices into improved treatments and quality of life for individuals with SCI. We hope this information clarifies the work of the Rick Hansen Foundation and the Rick Hansen Institute. Together, we form one component within a very large community of organizations around the world, dedicated to improving the quality of life of people with disabilities. Our long-term vision is a cure for paralysis after SCI and our continued dedication to this vision is anchored in the ongoing advances happening in the field of SCI research. We encourage you and others interested to visit our websites at www.rickhansen.com<http://www.rickhansen.com> and www.rickhanseninstitute.org<http://www.rickhanseninstitute.org> to learn more about how we are working towards our common goals. Regards, The Rick Hansen Foundation and The Rick Hansen Institute

Please send a question to Rick Hansen Foundations new CEO

2011-07-27T15:33:00.008+09:00

Lately there has been a lot of debate going on in the spinal cord injured community about the commitment to a cure for spinal cord injury (SCI) of one of the biggest and most well funded global organizations dealing with SCI, the Rick Hansen Foundation (RHF) and its offshoots the Rick Hansen Institute (RHI) and International Collaboration or Repair Discoveries) ICORD.

Why there is a need for three organizations with their own premises and staff, I don't know and it's not the point of today's blog.

Basically RHF funds three areas of work; quality of life programmes, translational research into the care of people with SCI, and translational research into a cure for spinal cord injury. This is where the debate starts.

As the science for a cure comes closer within reach (see a list of global clinical trials) many believe that a big organization like RHF should be spending more money and influence to accelerate a cure, especially since a cure for sci is one of the goals of RHF. They state their goal very clearly. "A world without paralysis after spinal cord injury".

I will be clear, I am part of the group that believes RHF could be doing more for a cure. Why do I believe this?

Looking at a list of recent scientific work being sponsored by RHI and the list of researchers and research at ICORD, I don't see that the regeneration of the central nervous system (CNS) is getting much attention.

But before I criticise I want more information on how the funds gathered by RHF are divided and more to the point, how much is spent on CNS regeneration to get us out of our chairs.

I invite you to send an email (by using the form below) to Mr. Art Reitmayer, the new CEO of RHF, congratulate him on his appointment and the 25th anniversary of Hansens's Man in Motion World Tour, and to ask a very specific question; what percentage of money is being spent by RHF directly to cure paralysis?

Don't worry if you're not Canadian. Rick Hansen has travelled the world to raise awareness about SCI and you can donate to the foundation from any country on earth. Actually, if I get an answer and I'm satisfied that a fair amount of money is being spent on cure, I'll be making a donation!

This campaign has ended
And watch for Part II
///////////////////////////////////////////////////////
Please answer my very important question

To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF)

Cc.
Mr. Rick Hansen and Mr. Lyall Knott, Co Chairs, RHF Board of Directors
Mr. Jim Watson, Secretary, RHF Board of Directors
Mr. George Gaffney, Treasurer, RHF Board of Directors

RHF Board of Directors
Mr. Matthew Bosrock
Ms. Sally Douglas
Mr. Perry Goldsmith
Ms. Amanda Hansen
Mr. Jonathan Kallner
Mr. Tod Leiweke
Ms. Sue Paish
Mr. Peter Ufford
Ms. Christine Day

Mr. Bill Barrable, CEO, Rick Hansen Institute,
Dr. Tom Oxland, Interim Director, ICORD

On the 25th anniversary of Rick's heroic journey to cure paralysis I would like to congratulate you on your recent appointment as CEO of the Rick Hansen Foundation. If Rick believed, twenty five years ago, that a cure for paralysis was possible, RHF should feel that a cure is now an inevitability in light of recent scientific progress.
As a person concerned about spinal cord injury (SCI) I believe that the appointment of a new CEO at such an important juncture allows RHF to accelerate its work towards a cure. As we all know a cure will not come from hope alone but through hard work, perserverence and the support of science.
However, I am concerned that RHF may have lost some focus in the pursuit of a cure for spinal cord injury. My concern stems from information posted on both the Rick Hansen Institute and ICORD (both established and funded by RHF) websites. Looking at this information I do not see central nervous system (CNS) regeneration as the top priority of either of these two groups.
Therefore 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.
I realize that care and quality of life work is important for those living with SCI, but a cure that is showing itself to be within our reach is just as important and is actually the ultimate form of care/quality of life.
Thank you for reading this and I hope for an answer to my question in the very near future.

Advancing world knowledge

2011-07-23T14:14:00.001+09:00

World knowledge took a giant leap forward with the publishing of a new Kinsey Institute report.

It was quite the report where you can see research dollars at work to 'advance world knowledge' which is one of the goals of the Kinsey Institute.

This groundbreaking study flies in the face of conventional wisdom.

Cuddling is more important to men than women, survey says

But what's the point? Well, according to Jennifer Bass, director of communications at the Kinsey Institute, "This study makes it clear our assumptions aren't always borne out by research."

So the point of this study was to show that our assumptions aren't always correct. Wow! I always thought that my assumptions were correct. I guess, I'll have to rethink my assumptions.

Well, just so the Kinsey Institute doesn't try to get any research dollars for spinal cord injury under the pretext of research in order to 'advance world knowledge', I'll give them some of my findings for free.

Ground breaking research by Dennis Tesolat

People with spinal cord injury have more difficulty walking than those without spinal cord injury.
Men with spinal cord injury tend to drink more beer than similarly injured female subjects.
Spinal cord injury impacts on sexual function.
People with SCI spend more time in the bathroom per visit than non-handicapped people.
Those with SCI don't find lounging in the chairs to be a comfortable activity.
Assumptions that living with SCI is something that you can adjust yourself to, proven wrong.

If the Kinsey Institute has any sex type questions for me, they can write me and I'll answer to try to save them some money as long as they agree to put their money into real research for the real problems facing the world.

From the European Spinal Cord Injury Federation (ESCIF)

2011-07-13T13:52:00.006+09:00

Good news from ESCIF!

Download PDF here.

Also available in the following languages:

STATEMENT ON SPINAL CORD INJURY REGENERATIVE RESEARCH JUNE 2011

About 2.5 million people live with a spinal cord injury (SCI) globally. In Europe at least 330,000¹ individuals suffer from the condition, with about 11,000 new cases every year. Apart from the disastrous social and human consequences², a recommendation from the Council of Europe (REC 1560 (2002))³ highlights the huge economic cost⁴ incurred and concludes “Council of Europe member states should make greater concerted efforts with a view to supporting and financing research in this area.’’

The European Spinal Cord Injury Federation (ESCIF) has been committed to supporting and promoting SCI research since its foundation in March 2006. The federation has been actively involved in initiating information-gathering projects among its members and has collaborated with SCI professionals and researchers in European research efforts. The ESCIF statutes underline the federation’s support for research that will enhance the quality of life of people living with SCI – but do not mention research into functional recovery. In 2006, in Europe, the possibility of a “cure” for paralysis seemed a rather remote prospect.

Since then, however, neuroscience has made significant strides towards curing paralysis so that some degree of functional recovery is now a realistic goal. Many promising lines of research are currently undergoing clinical trials across the globe and many more are preparing to go to human trials. In order to promote scientific breakthroughs and their successful translation to humans, substantial support, funding and infrastructure is essential.

We, ESCIF, representing hundreds of thousands of people living with SCI throughout Europe, strongly support regenerative research for spinal cord injury to help reverse paralysis in those millions already injured, and those yet to be.

Therefore we urge the Council of Europe member states, the EU and the EU member states to support and invest in regenerative research for spinal cord injury by:

• Increasing funding for basic, translational and clinical aspects of regenerative research for spinal cord injury

• Enabling timely translation of promising lines of research from laboratory to the bedside through sufficient funding, efficient infrastructure and collaborative networks

• Facilitating the adoption of suitable regulation and legislation to allow for efficient and timely translation of promising lines of research without compromising patient safety and ethics

• Setting up and implementing a Spinal Cord Injury Cure Plan making the cure of SCI a national and trans-national priority

Lastly, it should be remembered that promising regenerative research in the field of spinal cord injury will also contribute to research for other neurological conditions such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Parkinson’s, and Alzheimer’s.

The Executive

EUROPEAN SPINAL CORD INJURY FEDERATION

www.escif.org

Contact: president@escif.org

¹ Source: Recommendation 1560 (2002) 1 /Council of Europe Towards concerted efforts for treating and curing spinal cord injury

² Consequences of a spinal cord injury include: Loss of the use of limbs, loss of sensation, lack of control of bowel/bladder and sexual function, plus untreatable neuropathic pain, spasticity and threat of infection, inability to breathe (high cervical injuries)

³ Recommendation 1560 (2002) 1 /Council of Europe op.cit.

⁴ Cost generated by SCI: ‘’In the United States, the aggregate costs of spinal cord injury have been estimated at US$9.73 billion per year’’. Source: Recommendation 1560 (2002)1 / Council of Europe op.cit.

Being a little nuts never killed no one

2011-07-03T14:02:00.001+09:00

I made the builder raise his eyebrow at me the other day, and then at the end of our talk I confirmed in his mind that I was a little nuts.

The builder? That's right.

Senbayashi shopping street

After almost a year of humming and hawing I have decided to stay in my adopted hometown of Osaka and in my own house. Osaka is a great place and if it weren't, I wouldn't have lived here for the past seventeen years. I live close to the Senbayashi area of Osaka and everything is at my fingertips. Want a drink, something to eat? It's there. Five minutes to the subway and fifteen minutes to the train. Even when it's raining I go through the covered shopping street (in the picture to the right) and don't even get wet.

About my house; why is it so great? The reason is simple, it's MY house and for a house in the middle of a crowded city, it's quite roomy inside and out. I have a relatively big driveway (and no car to jam it up) and even some space behind my house (which is rare). I grew tomatoes and peppers in this space and built stuff. I'd come home in the hot Osaka summer, go to the back, open a cold beer, watch my tomatoes grow, and sand wood for hours. The only problem with my house now is that it's a three story house with the bath on the third floor, so we had to consider what to do.

I had a few options after I got paralyzed. The first option was to sell this place (which I had built and only lived in for about a year and half before this happened to me) and build a two story house which is completely barrier free and accessible. It would have been like preparing for a life of paralysis, so I said NO!

The other option was to move back to my hometown of Woodstock, Ontario where land is cheap and build a nice bungalow which would also be totally accessible for a wheelchair user. As much as I would love to live back close to my family and friends, it would have again been preparation for life in the chair. Once I considered this, I decided that it was NOT an option.

So I made the choice to renovate my house, but just minimally. We decided to build in my special area in the back. There will be a bedroom (so I can get my bed out of site), a big toilet, and a shower area. This will make the first floor completely livable.

The other options which I discarded were what made the builder raise his eyebrow. We talked about building a cement ramp so I could use the front door (currently I have a wheelchair lift and use the sliding door off the front door). I asked the builder what I would do with a cement ramp once I walked again. The lift I can just give away, but what can I do with cement and as much as I can imagine myself walking and swinging a sledgehammer to smash the ramp into little pieces, it would be too much work.

We discussed a chair lift to the second floor at the cost of about $20,0000. Again, I asked the builder why I would want to prepare for a WHOLE life this in this chair. The other eyebrow raised.

So instead of discussing cement ramps and chair lifts my last question confirmed in the builder's mind that he was dealing with a crazy man. I interrupted his ramp and chair lift talk to ask the most important question. I asked him how hard it would be to take the roof off my new addition and build an open air bath in the future. He asked why and I told him that once I walk again I won't need the extra bedroom but an open air bath would be nice.

He left wondering what my chances were for walking again, and I think that instead of the regular thinking about NEVER WALKING AGAIN, he left with the idea that it was possible (but a little crazy).

Currently there are very few people around me that don't think I'm nuts. Two of them are my boys. They ask about the first thing we're going to do after I walk again. I tell them that we're going to carry every chair in the house to the third floor and we're going to drop them onto the cement driveway below, watch them smash, and laugh like madmen.

They don't raise their eyebrows or say that I'm crazy. They only ask one question. "Papà, how are we going to do our homework if there aren't any chairs?"

I tell them, "You'll do it standing. I'll build you a desk with longer legs."

Commitment! A test run for future activity.

2011-06-15T18:30:00.003+09:00

If you haven't yet signed on to our fight to cure paralysis, you can do so by going here.
////////////////////////////////////////////////////////
I'd like to thank you again for taking your time to fill out the survey. Not only are your opinions appreciated, but more importantly your commitment to take part in activities to cure paralysis.

We all know that hope by itself is not enough, our activity to bring about a cure is also necessary. There are now 55 of us who have made a time commitment to curing paralysis.

Since the last time I contacted you I have been talking with others on this list about activities that we can take part in, and I'd like to make a more all encompassing proposal to this group next week. Saying that, there is one activity that we can all start taking part in right now.

Two weekends ago some people on this list took part in the International Spinal Cord Society (ISCoS)/American Spinal Injury Association annual meeting in Washington. At this conference a leaflet that was produced by a larger group, many who are on this list, was also distributed. The leaflet is a simple front and back A4 size paper folded in two. The front and back of the leaflet are messages from those living with spinal cord injuries (SCI) to clinicians about a cure for paralysis. The inside is a list of current clinical trials going on around the world to cure paralysis.

Our message was very simple; It's time to start getting onside of a cure for paralysis and to start talking to patients about a cure. This is not spreading false hope, but real hope based on real scientific evidence.

People have to be made aware that not only do we WANT a cure for paralysis, but that SCIENCE SUPPORTS our goal.

What I would like to do for a first activity is to start putting this leaflet out, electronically and on paper. It's written especially towards medical professionals who deal with paralysis but this doesn't mean the information is not valuable to others.

But before you start sending it all around the world, I want you to make a commitment about who you will send it to. If you're like me who tends to put things off, making a clear list and sending it to me as your commitment, is important.

So first, I'm going to make a commitment to you.

I'm going to distribute it to: My three doctors. The 43 rehab therapists at my hospital. The Japan Spinal Cord Foundation. Two friends of mine in wheelchairs (and I'm going to ask that they give it to their doctors and therapists so I'll give them multiple copies each). My own diet member, and I'm going to carry around some copies with me at all times to hand out to others. Also, I've already put the links up on my facebook page and twittered away. Plus it's on my blog.

Please let me know who you are going to give it to and we can keep a running list about how many copies have gone out. If you prefer not to do this, please also let me know.

Let's see if we can do this together as a test run.

The copies are available for download here.

List of clinical trials (English only) - This is the inside of the leaflet.

Message about a cure for paralysis (front and back of the folded leaflet) - Available in English, français,italiano, 日本語/Japanese, español, Россию/Russian.

A full colour version of the English is here, outside and inside.

I hope to hear back from you about how many copies you will be putting out. Remember there's nothing stopping you from standing in front of your hospital and handing it out (I'd do it with a friend to avoid looking nuts ;)

To the International Spinal Cord Society

2011-06-11T16:40:00.004+09:00

This is a small leaflet presented from some of us living with spinal cord injury to ISCoS (International Spinal Cord Society)/ASIA (American Spinal Injury Association) annual meeting in Washington.

The leaflet is two pages. It contains a message from those living with spinal cord injuries (download) - full colour version, plus a list of clinical trials that are going on around the world (download)- full colour version. If you have a moment, give it to your doctor, rehab therapist, or any medical professional that deals with spinal cord injury.

Also available in the following languages:

Let's work together to educate patients on what science can realistically mean for them and future generations.

With all our might, we will support those of you who will partner with us to advance a cure. Strive to cure spinal cord injuries with the same zest as you have cared for us.

Right now, together we can!

Thank you all from Michael Martinez

2011-05-29T15:47:00.000+09:00

Dear friends:

I want to thank you for your support and help in my moment of need. I thank you from the bottom of my heart for what you've done for me. I came to this country with a work visa (P1). My visa was in the renewal process but I had my accident and the StemCells surgery is not done in the US.

I had been well informed by the doctor at the racetrack, David Seftel, about this surgery, but I wouldn't have had the chance to go there and return to the States because of my visa issue.

Thanks to friends like Dennis Tesolat who got my story out to all of you, I really don't know how to thank you for your emotional support. God is great and I know he doesn't forget his sons therefore I've never lost my faith. I also thank God for having in this world people like you that have given me this great support and I thank the immigration for approving my green card. With tears in my eyes I thank you all and our lord. Blessings to you and your families.

Michael Martinez and family.

When people learn to spit together, they'll make a tidal wave

2011-05-26T21:16:00.001+09:00

These are the results from a small poll I conducted. You can find the poll here.

I know that some are going to say that it's a pretty sad result. Only 104 responses? Only 43 people left contact details? I'll answer them that it's got to start somewhere. Working as a union organizer I have been to many meetings with only me. Have stood out on very cold nights in front of workplaces to hand out leaflets just to find out no one was interested. Hell, I've even traveled two or three hours to organizing meetings which were attended only by me.

I'm from the three is better than one club, so I am very happy that this first group has come forward. It will take time for us to get on our feet, but we'll get there. I heard a quote once in a movie, but I don't remember what movie and it went something like this: "When people are learn to spit together, they'll make a tidal wave."

The comments are unedited and in them I'll hope you'll find some good ideas for future activities and also see regular people's raw passion for getting out of their chairs, and the barriers that they believe are stopping them. Some of these feelings may shock you.

So without further adieu. The survey says...

104 Responses.

Question 1. Which statement best describes you?

73.02% have a spinal cord injury.

22.22% have a close family member or friend who have a spinal cord injury.

4.76% don’t really have any close connection to those with a spinal cord injury.

Question 2. Do you believe that finding a cure for paralysis caused by damage to the spinal cord is possible within the next five to ten years?

78.46% YES

4.62% NO

16.92% Undecided.

Question 3. What do you think is standing in the way of a cure for paralysis at the current time? In order based on the most responses:

Lack of government funding.

Lack of collaboration amongst scientists.

Lack of unity within SCI community.

Failure of the big Spinal Cord Injury/Paralysis groups to fund clinical trials.

Lack of the science necessary to cure paralysis.

I don’t know.

Question 4. What other things do you think are getting in the way of a cure for paralysis?

l egos

l not as many clinical trials as there should be

l FDA and other regulatory agencies

l the religious right wing fanatics

l Most people (political leaders, industry leaders, do-gooder celebrities, doctors and just "people") don't care. Curing paralysis is very low on the list of priorities.

l funding funding funding

l Visibility , there walks for breast cancer, autism, Alzheimer’s AIDs.

l Greed. When a wheelchair costs $4500 plus $1500 for wheels plus drug companies’ stand to lose money if a cure is found. They'd rather "treat" than "cure"

l religious ignorance, apathy

l Lack of young students entering neuroscience. Lack of wealthy people sympathetic to the course.

l It is not a priority for the majority of this country (USA). Politicians want to be in office and we (SCIs) are a huge minority compared to other groups to lobby for.

l more strong international communication between people, scientists and relatives but most of all priority to the governments and medical community

l press stories showing sci victims as happy with their lives and inspirational. Someone should do an interview asking Rick Hansen about his bowel program or his lack of sexual function...

l Fear of failure by scientists and FDA, when, failure is the greatest teacher.

l big picture is missing + lack of somebody making the decision, as explained in your blog, to cure paralysis. brain paralysis of sci community. lack of a big guy or big guy's daughter's breaking his/her neck

l Courage

l Small sci community, making them not a very profitable venture to find a cure by commercial entities. Thus, we really need to engage government to fund sci cure efforts

l Push from our nations leaders to make cures for paralysis a priority.

l The common idea that it's just sitting in a wheel chair doesn't help. Most people with no knowledge of the problem can't even imagine the threats to health faced by wheel chair users.

l Society doesn't view it as a problem that needs attention, like say it views breast cancer.

l our.handicap isn't and won't be considered a priority because it only affects a minority of people

l It's not a priority because we can keep people alive whether or not they are cured.

l the movement to stop stem cell research, but I hope that is over now.

l too many chiefs, not enough Indians.

l The government wanting more and more research on rats, mice, etc.. The research needs to be on humans and there are a lot of willing humans.

l religious, closed minded for stem cells

l Spinal cord injury doesn't get enough attention as does cancer etc.

l Most of the scientific research is made by private companies and they don't have enough interest in finding a cure.

l The Government FDA people are afraid to work to get money for research

l no backing from any governments

l No balls.

l politics and religion!!!!

l funds directed into different areas of interest, And not enough focus on science as a whole Also to many small goups doing the same goal instead of combining resources and countries that could essentially provide the same service but cheaper and i am referring to trials. eg: one English pound to $2.5 dollars aust therefore stop thinking boarders but humans

l religions

Question 5. What do you think of the following statement? "The fact that not one government in the world has made a cure for paralysis a national priority is holding back a cure."

72.58% Agree

8.06% Disagree

19.35 % Undecided

Question 6. Would you personally be willing to involve yourself in making a cure for paralysis a national priority in your country?

60.00% YES

5.00% NO

35.00% I’d be a willing supporter

Question 7. What activities do you think would be effective in making a cure a national priority in your country AND that you would personally involve yourself in? (write as many things as you want).

l Kick the asses of: SCI Organisations FDA/EMA/NICE etc Egotistic scientific advisory board chairman Spinal Injuries Associations Clinicians who hide behind false hope Veteran SCIs who block the path with their negativity

l $

l Fundraising, awareness, more clinical trials, Gov't involvement

l same approach as breast cancer is taking

l Neutralize the opposition of my national SCI org. The rest will be easy.

l we need a HUGE showing in WA DC, a rally where we could meet with politicians, be seen on tv, chain ourselves to the one of the national monuments

l Lobbying the government to provide funds and resources to top medical scientists who are committed to finding a cure (such as Wise Young) Recruiting large numbers of researchers to work under these leading scientists. Educating both the public and the medical profession about the work that has been done so far and the progress that has been made. This could be done by public service advertising for the general public and through the traditional channels for the medical profession (symposia, articles in medical journals) as well as through "ambassadors" from the spinal injury community: people living with SCI and doctors/scientists working for a cure. We need some people to give a "face" to SCI, to remind the public and the medical profession every day that people are suffering and that a cure is possible given adequate funding, effort and commitment. I would involve myself in any and all activities to contribute to making a cure a national priority.

l justadollarplease.org, scinetusa.org and. writing my local members in my community in Texas

l We need to be seen.

l Take the $14 million going to some jackass politicians severance package when he gets voted out and put that money towards research and testing.

l prominent spokespeople, annual events

l National telethon..... Percentage of road traffic fines go directly to funding clinical trials.

l I think it will unfortunately take a high level public official (ie President, VP, etc.) to have a family member suffer a SCI.

l keep on talking about it, everywhere and with everyone! people have to be informed to act!

l giving (insert name of conservative billionaire here) an sci. this will be done in 2 years.

l for the SCI community to unite and make it happen

l Scientists involvement in politics and creating public awareness of science breakthroughs. Celebrity involvement with SCI issues. Physicians becoming aware of SCI research and their involvement in creating public awareness with patients and politicians.

l I am a scientist working on this field.

l Promoting awareness that sci can happen to anyone - Get sci patients on national channels and tell the audience true stories abt how injury happened, how difficult to live at the moment with all the problems (rather than miracle stories about someone walking which don’t do sci any favour as then everyone thinks that all is takes is hard work and determination - which is not true) - dedicating free off-work hours in promoting awareness - in pubs, public places etc and based on this open up very aggressively campaign to promote finding a cure.

l meeting with leaders. Media exposure.

l I don't think it’s a reasonable goal.

l Those who are injured and family members need to get more organized and vocal.

l I'd like to go to the next March on Washington, with my paraplegic son.

l advocating for free rehab.

l a sharing of information, lab data, facilities and a strong combined team effort across oceans borders and continents. many scientists are spending as much time and energy wooing their governments for money as they are researching.

l I really don't know the answer to that, but I would do whatever I could to help!!

l Just a dollar.org

l awareness

l Lobby Parliament and need national advertisement campaign to show the population the pain and distress spinal cord injuries cause patients and their families Show how a cure will save enormous amounts of money now spent on caring for patients

l Spreading as much information as possible to make people aware of this important matter.

l Spinal Cord Telethon

l Suicide in public.(burning)

l religion, big pharma, nih, fda, scrm, need to get their act together ASAP

l advocate to all government and organized bodies

l Walks and one unified website

Question 8. How much time could you personally give each week to making a cure paralysis a national priority?

27.27% 1 to 5 hours per week

9.09% 5 to 10 hours per week

3.64% 10 to 15 hours per week

5.45% 15 to 20 hours per week

1.82% 20 to 25 hours per week

3.64% 30+ hours per week

49.09% I don’t know but I’d be a willing supporter

Question 10. Where do you live? (Those who answered the question).

1 Australia

3 Canada

1 Denmark

2 France

1 Hong Kong

3 Italy

2 Japan

1 Unknown

1 Spain

1 Taiwan

4 UK

22 USA

Question 11. Email addresses

43 people left their contact details

Question 12. Anything else you want to say?

l Hope this goes OK.

l I have no idea what needs to be done. Tell me how I can help and I will do my best.

l Cure the paralysis

l i want out of this wheelchair asap

l For the past 19 months I have been caring for my son (C5-6 injury) and have not become involved in any efforts to raise funds, raise awareness or do anything else to contribute to finding a cure. My son will continue to take up much of my time, but I want to help. Please get in touch by email.

l Get involved and help bring a cure to people living with spinal cord injury!

l Let's move ahead

l Keep up the good work fella. Let's fire this up.

l god bless all of us.

l This is a great start, let’s hope it goes somewhere productive to SCI cure.

l never lose hope

l i don't really have much time to spare, but i can send cash when you get a plan together.

l very good questionnaire Dennis remarks- curing in 5-10 years: i believe some level of recovery is possible. -about country action: i am in exile in NL, so difficult to act for France, and i feel i can have a better role on global matters. on time spent: hopefully i can increase the amount of time available for sci cure soon.

l Thanks for putting so much work into this. I really hope this can translate into something meaningful. I’m willing to support as much as i can.

l Thanks for your involvement.

l I think that research should avoid tunnel vision. I have maintained a positive attitude to stem cell research, because I feel it has so much to offer. However, SCI treatment, I think, should not be seen solely as a stem cell issue.

l keep the faith and let's work together to find a cure

l Great poll, Dennis. Eager to see the results.

l I said I would be a willing supporter-but I would be a doer if I knew what to do. I'm trying to win the lottery to donate to SCI research, but you know my chances at that, about as good as my being rich on my own.

l On any given day I could answer most of these questions differently. Every time I think about the realization of a cure for paralysis I get the feeling that there is something missing from all the processes we try to get there. I just don't know what that missing element is.

l its gonna take the whole paralysis community to make it possible

l Thank You!!

l My daughter was injured at 10 years of age.

l Every single person can make something to achieve this goal. Let's do it!

l i already place a raffle to raise money for Spinal Cord Society

l good luck man hang in there lots of hope here. Hopefully the fda/nih will fund more research. politics and religion need to realize how backwards tehy are being. stem cells have so much potential. have your heard of the single blastomere technique? it derives one cell from a very young embryo. the embryo continues to grow regardless of the missing cell. check it out, advanced cell technology and robert lanza. seems like hsec could be a good answer but nih/fda/religion/courts are hindering progress. ...but i think we will see some amazing cures within this decade. best of luck!

l yes help get me out of this chair and walking and using my hands before 2020

l hope something happens soon

WE WIN!!!!!!!!!!!!!

2011-05-19T21:33:00.000+09:00

Michael Martinez will have his final interview for his green card next week and will go to Switzerland for the trials as soon as the word comes down.
This is Michael's victory. This is your victory. This is our victory!

Tonight we have truly shown that our voices are not empty, that we can make a difference in this world!

Your help is urgently needed

2011-05-17T06:55:00.003+09:00

Your help is urgently needed!! Two minutes of your time can make a difference in Michael Martinez's life. And an extra few minutes to pass this on to your friends will make an ever greater difference.

On 12 September 2010 at a race in northern California the horse Michael Martinez was jockeying clipped the heels of another horse and catapulted him head first into the track with the horse then rolling over him. After 11 hours of surgery he was left paralyzed from the injury suffered to his spinal cord.

He was turned down for the Geron clinical trials to cure paralysis, but now he has been offered a spot in the StemCellsInc. clinical trials in Switzerland. This trial will check both the safety and efficacy of neural stem cells in repairing the spinal cord.

The problem is that for him to have the optimal chance of success, he must be in Zurich within 10 days to two weeks but immigration bureaucracy is getting in the way.Martinez has applied for permanent U.S. residency and passed all required tests. But a final interview by the U.S. Immigration Department, which is said to be only a formality, is three months away. Without residency, Martinez, would likely be denied reentry into the United States.

Read the full story.

His doctor David Stefel, who I have been in contact with, is urging people to contact US immigration and California Senator Barbara Boxer to appeal to them to get Michael to Switzerland in time for the trials.

Please, please help as it will only take a second.

The form below will get an email directly to the following people.
Robin Barrett, Field Office Director, United States Citizenship and Immigration Services San Francisco office.
Barbara Boxer, US Senator from California.
Dr. David Stefel. Michael Martinez's doctor.

Liberation Treatment becomes Liberation War

2011-05-14T19:36:00.000+09:00

I don't have a lot to say today as the news reports say it themselves.
A revolutionary treatment for MS which is simple and is showing very clear positive outcomes.
Patient demands for access to the treatment clashing with demands from the medical establishment for more data.

Now, I won't argue against the need for better data and proper clinical trials but how long are people going to have to wait for relief from a chronic, degenerative disease?

But I know that people are going to tell me to hold on. They're going to say this is a new idea and is going to take years of testing. That we shouldn't put people at risk with something that has just come out.

And I'll answer them with the real news behind this story, that behind all the good news in this story is a piece of really sickening news. The sad part of this news is that it's not new.

We hear lots about the a Dr. Zamboni from Italy and his pioneering work in this 'new' therapy for multiple sclerosis by treating Chronic Cerebrospinal Venous Insufficiency or CCSVI with angioplasty, but there are a few names missing.

Professor Eduard von Rindfleisch who proposed a vascular cause for MS in 1863.
Dr. Tracy Jackson Putnam who also proposed a vascular cause for MS in the 1930s, and Dr. Franz Schelling.

In 1973, Dr. Schelling began investigating the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger".

Schelling's 1981 discovery, at the Hospital for Nervous Diseases in Salzburg, of a striking widening of the main venous passageways through the skulls in victims of multiple sclerosis were to occupy his thoughts through the following decades. And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.

The 1981 discovery is over thirty years old but was never examined until Paolo Zamboni started studying it in 2002 and connecting his own work looking at MS as a vascular issue with Dr. Schelling's years of background studies.

According to Dr. Schelling he approached hospitals, neurosurgeons, MS societies and was never allowed to carry out his research. All told him the same thing; MS is an immune disorder, not a vascular disorder. He says, "I could never have imagined that so many doctors might have so little interest in serious scientific work and clear logical reasoning."

Had this research been carried out when the theory was first raised it would possibly have saved millions of MS sufferers including my own aunt who has had MS for about thirty years.

Let's make sure that we in the SCI community watch the medical world with informed minds and start organizing now for our War of Liberation so we don't have to wait a hundred years. The MS people have shown clearly that our voices do have an impact.

Watch the CTV news report: The Liberation War.

Read the story in the Globe and Mail: Patients flex muscle in ‘war’ over MS treatment

PS. People often tell me that I'm a little too dramatic so before people accuse me of being dramatic again by using the today's title, I'll pin it on CTV News, because it's theirs.

Time for a Manhattan/Apollo Project to cure paralysis

2011-05-08T16:54:00.008+09:00

The short survey is at the end!

"I believe that this nation should commit

itself to achieving the goal, before this decade

is out, of landing a man on the Moon and

returning him safely to the Earth. No single

space project in this period will be more

impressive to mankind, or more important in

the long-range exploration of space; and none

will be so difficult or expensive to accomplish."

- President John F. Kennedy, 25 May 1961

I have been thinking of writing this post for some time to commemorate the 50th anniversary of Kennedy's declaration to put a man on the moon in less than ten years. I wanted to time it for 25 May when he made the declaration, but recently I got asked a good question in one of the forums I belong to so thought that I wanted to answer it with this blog.

Basically the question I got asked was, "when are you going to cure paralysis?"

It's a good question because I think it could get done within five to ten years. Not that I'm going to do it by myself, we have to do it together.

John F. Kennedy declared in 1961 that America would land a man on the moon by the end of the decade, and for good or bad, the landing took place in 1969.

Franklin Delano Roosevelt decided to build an atomic bomb, and that horror exploded in Hiroshima and Nagasaki within a few years.

Were FDR or JFK scientists? No, they were LEADERS who DECLARED what science would do. They didn't sit and study science (and I'm not saying we shouldn't), they made it a national priority and then left it to the scientists to make it happen. I'm also not saying that there was no science already in the works to complete these missions, but it wouldn't have happened if an influential world leader didn't put their might behind the projects.

They brought the scientists together, gave them their deadlines, paid for the work 100%, and gave them whatever resources they needed.

They didn't fund private companies and universities to carry out independent work for profit and/or glory. Roosevelt dealt with the only scientist, Eszilard, who argued about his patent by having him fired and not allowing him back on the team until he sold the patent at a reasonable price. You would be right to think of Don Corleone with a gun to a guy's head demanding an answer to an "offer he can't refuse".

Roosevelt didn't send Oppenheimer out on a world tour in a atomic fired wheelchair to raise money and awareness. Kennedy didn't send the Apollo Project scientists out wearing rocket costumes to do little songs and dances for rich investors and donors to get the cash for the Apollo spacecraft. No. Roosevelt and Kennedy worried about the money and let the scientists do their important work collaboratively and with a deadline in mind.

Of course there were naysayers and even some scientists said that these things couldn't be done, but they were done, because they were declared.

At this point in history we are further ahead in curing paralysis than what was scientifically available before both the Manhattan and Apollo projects were launched.

We have leading scientists in the field of spinal cord regeneration who are very clear in their statements of "not if but when" in regards to a cure for spinal cord injury.

Therefore I say the when is within five to ten years of the cure for paralysis being made a(n) (inter)national priority we can cure paralysis.

The national priority part is up to me, you, and others who want paralysis cured.

I don't care which country does it first. We must truly be internationalists to solve this problem.

Just because I'm interested in what people think is getting in the way of a cure for paralysis caused by an injury to the spinal cord, I have this short poll that I would like you to take.
*************************

The May Day spirit to cure paralysis

2011-05-01T12:51:00.000+09:00

First, I wish everyone a happy May Day!

For those of you who don't know May Day, it is the celebration of the international workers' movement.

We celebrate our victories.

We make noise so that the powers that be don't forget that we are here and watching.

And most importantly, we continue to struggle.

May Day was born in struggle.

It commemorates that Haymarket Massacre when police fired on a demonstration during a general strike in Chicago for the eight hour day.

May Day is international.

It is a national holiday in eighty countries and celebrated unofficially in many, many more. Canada and the US tried to purposefully depoliticize May Day by making a separate 'Labour Day', but even in these two countries May Day is making its way back.

May Day is a celebration of NOT waiting for gradual change.

Of not going cap in hand begging for improvement.

May Day is about direct action to change lives.

And May Day is an important lesson for us fighting to cure paralysis.

Our struggle must be international. Science is not confined to any one country and when the cure comes must be made available internationally.

We must not wait for doctors, scientists, or big pharma to cure us. We must struggle actively FOR a cure and AGAINST any barrier or person that stands in the way of the cure.

And now, before anyone accuses me of using the word struggle too often, I'll let you know that it was done on purpose, not because I don't own a thesaurus, and I'll leave you a quote from an anti slavery crusader. Frederick Douglass was born a slave, escaped to freedom, and campaigned again slavery his whole life.

The next time someone tells you that sitting and waiting for a cure for paralysis is the answer, and that we should not raise our voice too loudly or boldly, please tell them what Frederick Douglass said.

"If there is no struggle, there is no progress. Those who profess to favor freedom, and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle."

PS. The list of countries to the left is not a list of countries celebrating May Day. It is a list of countries where I have received hits from the English, Japanese, Italian, French, Russian, and Spanish versions of this blog. Curing paralysis is truly an international effort.

"The International Association for the Advancement of Creative Maladjustment"

2011-04-24T13:52:00.000+09:00

As a trade unionist and socialist these words by Martin Luther King always rang true to me.

"I never intend to adjust myself to segregation and discrimination. I never intend to become adjusted to religious bigotry. I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few. I never intend to adjust myself to the madness of militarism and the self defeating effects of physical violence."

And I guess now that I am a new paraplegic these words ring even truer.

After listening to this after a long time, two recent blog posts came to mind.

One was an imaginary conversation I had at my 'Spinal-Cord-Injury-group-therapy' with my counselor.

Counselor: "If you don't accept your lot in life, you will never adjust."

Dennis: "I'm not really interested in adjusting to this life. I'd rather fight for the cure. Not just because I want one, but because it's possible."
Counselor: "Then you my friend are maladjusted and you get an F in group."

And the other was a blog post written by a friend and how he was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury." Basically he was called a maladjusted, too.

In the year 2011 is it right that we are still trying to adjust ourselves to paralysis when we have excellent results in animal studies and clinical trials in progress to cure paralysis? Actually, the thinking that we should adjust is what is stopping the cure.

I appreciate all the work done by those before us, who have struggled for better accessibility, chances at employment, etc, but as long as we continue to think in 2011 that paralysis is something that you adjust yourself to, the further we will be away from a cure.

The image of the 'happy roller' rolling through a successful life in the chair, is a myth.

For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%. And to this I never intend to adjust myself.

For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability. And this I never intend to adjust myself to.

For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury." I never intend to adjust myself to a lower life expectancy than others.

For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless. And to this too, I never intend to adjust myself.

If refusing to give up hope for a cure, when evidence supports it, is to be labeled maladjusted, then I too am a maladjusted and I'll throw my hat into the ring of "The International Association for the Advancement of Creative Maladjustment".

Italian IV National Day for Persons with spinal cord injuries

2011-04-13T15:55:00.008+09:00

The will of the people inexplicably ignored

By Paulo Cipolla

First, it should be pointed out that the original idea to establish a National Day, was born from the need for clarity regarding the real chance to walk again felt by people living with spinal cord injuries.

It is clear that the only way to walk again is to help researchers. Therefore a practical way is to give economic support to Italian research and disseminate correct information about paralysis from spinal cord injury. It was for this reason that a national day dedicated to finding a cure for spinal cord injury was established, as also is the case for years many other diseases.

To accomplish this, the Tuttinpiedi (All Stand Up) Committee was formed in 2004.

To promote this, the Tuttinpiedi Committee, with over 20,000 people across Italy spontaneously joining, was formed in 2004 (it should be noted that the collection of membership was suspended because it had gone well beyond what was necessary).

The Committee Tuttinpiedi represented the will of the people to address and solve the problem of identifying a cure for spinal injuries. In fact, the primary purpose of the Tuttinpiedi Committee was to establish the National Day for Research on Spinal Cord Injury.

The FAIP (Federation of Italian Paraplegic Associations) faced with such a popular initiative could not ignore this phenomenon, which until then it had seemed strange, decided to support it.

In 2008, the national day was finally establish, but:
a) The popular will of the Tuttinpiedi Committee was to establish a Day of National Research on Spinal Cord Injury.
b) The FAIP establishmed the National Day for Persons with Spinal Cord Injuries, but the word research, the heart and soul of the popular will, was deleted.

The result is that today, in 2011, medical research on spinal cord injury in Italy seems abandoned and the people who believed a change would come with the establishment of a national day see their expectations thoroughly disregarded each day.

On April 4, 2011 many of us noted that:
1.　In no definably important news or TV program was the fourth anniversary of the National Day for Persons with Spinal Cord injuries even mentioned.
2.　In none of the events related to the national day was the topic of research for a cure for spinal cord injury even put on the agenda.

For example, In Milan, at the Spinal Unit Niguarda Hospital, organized a conference entitled:

"The UN Convention on the Rights of Persons with Disabilities: a step forward for spreading the culture of independent life"

I pointed out the disappointment that the topic of research had been totally neglected, ignoring the will of the more than 20,000 people who wanted a national day for research on spinal cord injury.

Because of this brief protest I was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury."

Frankly I do not care of this.

If you share my disappointment and want share your ideas with me, you can contact me via e-mail at paolo.cipolla(@)yahoo.it

Perhaps in future we might think of a way to reassert the original spirit of the day to what people with spinal cord injury would have wanted: "A day dedicated to the research for a cure for spinal cord injuries."

Translator: Dennis Tesolat

lunedì 11 aprile 2011 CelluleStaminali&BombeAtomiche: IV Giornata Nazionale della Persona con Lesione al Midollo Spinale

Welcome to the Spanish cure and Fenexy

2011-04-05T22:39:00.000+09:00

~by Carles Alcolea~

From our youngest days we are told at school that the illness is cured by gentlemen in white coats with test tubes, who are called scientists. We have always imagined them as mad scientists with wild hair, inside a gigantic building full of laboratories with infinite resources doing experiments which only they can understand.

Nothing could be further from the truth. How does science actually work? How do we discover the cure for diseases?

The harsh reality is that scientists are ordinary people, made of flesh and blood, with their families, their mortgages, and their own problems. They are usually people who have decided to commit themselves to research as the result of a personal passion, and quite often do not earn money with it; they live on their salaries as a teachers or from scholarship to scholarship.

Even then, some of the time that they could be dedicating to research to make more progress, is wasted filling in applications, applying for scholarships, seeking partners, trying to reduce costs, etc.

This is why things move so slowly.
What if the gap between science and society wasn’t so big?

After all, science is used to fix problems in society, why not ease the work on the ones who research how to cure us? Tomorrow you might need a therapy that has not been discovered yet.

The field of the spinal cord injuries repair is progressing quickly due to the latest discoveries. We have already broken the barrier that seemed unbreakable: spinal cord injuries are now curable.

But the science behind a cure for spinal cord injuries needs many things: money, incentives to attract new minds, human and material resources, etc.

The scientists need to meet frequently and talk about their progress to generate new ideas, to compare results, and to collaborate with one another. They need everyone’s support.

That is why Fenexy exists.
Founded: November 2010.

Would you like to do something to help in the meantime?

See Fenexy’s website at www.fenexy.org.
See Fenexy’s Facebook page at www.facebook.com/Fenexy.
At Fenexy there are many things you can help with, administration, advertisement, design, translation, etc.; there is a lot of work to be done.
Contact us at info@fenexy.org

PS. Great progress. This is the first post translated from another language into English. Thank you Pierre. All mistakes with the English are mine as I did the editing.

Seisan Kanri from Japan to help cure SCI

2011-03-27T18:05:00.002+09:00

I know that these days people's eyes are fixed on the catastrophic earthquake that hit Japan, but today instead of focusing on the problems facing Japan, I would like to talk about the positive things that are coming out of Japan to cure spinal cord injury (SCI).

Last year there were announcements of some interesting breakthroughs on the research front. First there was a report from Nara Institute of Science and Technology showing success in animal models of SCI using neural stem cells. Also a very promising report from Keio University and their use of iPS cells that got monkeys walking.

Recently I have been reading some information about Dr. Dezawa Mari at Tohoku University (which is in the area hit by the earthquake) and her work reprogramming neurons from bone marrow cells which could possibly be used to treat lower spinal cord injuries. And just up the road from me at Osaka Medical University, I hear noises about possible clinical trials using OE cells (OEG cells) to cure spinal cord injury.

But today, these are not the things that I want to focus on even though they are very relevant to curing SCI.

I think that sometimes people in the SCI community, including myself, are a little bit skeptical about research. We know that we need research to continue, but research without translational work (getting the science to people with SCI through clinical trials) is empty.

I work with many different people in the SCI community and we often talk about this problem with the translational work and how to solve it. We also talk about many different world organizations who raise a lot of money telling people that they want to cure SCI, but we don't see any progress towards clinical trials from these groups. Again, how do we regular SCI people get our message across to these groups.

The other day I received an email from one of my colleagues in the fight for a cure, and I think that since he knows my union activities wrote,
"We have nothing to bargain with here, we cannot withhold our scis as labour can be withheld."

This got me thinking about the characters that you see at the left. In romanized Japanese it is pronounced seisan kanri which translated into English means production control and it's how Japanese trade unions dealt with a very terrible situation at war's end.

See, Japan has a history of pulling itself out of terrible circumstances. I'm sure Japan will recover from this earthquake as it has from others. The damage done in this earthquake is being compared to the damage caused by World War II, of course on a smaller scale, and one of the things that pulled Japan out of the horror at the end of the war were trade unions.

Unions that were once crushed under the weight of a militaristic Japanese government prior to the war, came out of nowhere once this regime was defeated and started organizing. But they faced the very problem my friend's email stated. How do you go on strike when the factory or workplace is not even open because in many industries there was a strike by capital which refused to even open up workplaces? Or when the employer uses threats of closure to ward off strikes in a situation where not many people even had a job? See, they didn't really have anything to bargain with either.

In these situations Japanese workers used a new kind of strike called Seisan Kanri or production control. They didn't simply occupy their factories like the sitdowners did in America ten years before, they kicked out the managers and ran it themselves. Their bargaining power came from this, "Do you want your factory and the profits back? Then meet our demands."

And that's what about 200,000 Japanese workers did between December 1945 and autumn 1946 when it was outlawed by the supreme court (undoubtedly because it worked so well). When this tactic was successful the workers didn't just go back to the way things were. Eighty percent of the collective agreements won in these struggles (and in more traditional strikes) included clauses granting equal participation from labour on management councils and union veto rights over hiring and firing.

Now, we in the SCI community need to figure out how to apply this very important lesson in our struggle. How we can move from the sidelines of the battle for a cure into the mainstream organizations to make sure they are working for the cure. Not go cap in hand, but go in with more voices and more strength. To control the 'production' of the cure.

If workers in a war ravaged country with memories of jail for union activity fresh in their minds could do this, then we can, too. This is another contribution from Japan in winning a cure for spinal cord injury.

You can find more information about Seisan Kanri here.