YOU, YOURS, and Rick Hansen

Before I tell you what YOU accomplished, let me tell YOU that when people say that sending emails to big organizations to influence them to is a waste, YOU can tell them that they're wrong!

YOU made a big difference in one of the biggest spinal-cord-injury organizations in the world.
Because of YOUR emails the Rick Hansen Foundation looks like it has taken a change of course.

The first big news:
The Interdependence global conference sponsored by the Rick Hansen Foundation announced some very shocking news. In their own words, "Based on industry feedback and due to the current economic climate, the Interdependence 2012 program will now focus solely on Spinal Cord Injury (SCI) Research and Development."

They had planned a conference about accessibility, and healthy inclusive worlds, but YOUR email telling RHF to focus on cure made them rethink what's important to those living with paralysis. They call it "industry feedback", but I call it YOUR email.

The second big news:
This was also announced in regards to the Interdependence conference.

"The Rick Hansen Institute is providing emerging companies, seeking financing for an innovation related to accelerating progress to a cure for paralysis after spinal cord injury or innovations that will improve the lives of those living with SCI, the opportunity to pitch their company and innovation to the delegation at Interdependence 2012."

The Rick Hansen group is turning towards cure and YOU were a part of that because YOU sent an email, because YOU told YOUR friends on Facebook to send an email, and because YOU asked YOUR mother to send one, too.

We're not out of the woods yet.

These announcements do not mean that RHF...
...is now spending more on cure.
...will dedicate a larger portion of their funds on cure 

And it definitely does not mean that YOU and I can now rest.

I'm sure that YOUR voice wasn't the only thing that made them change, but two big coincidences in a row would be strange.

It does mean that they are open to hear YOUR voice if YOU say it in unison with others. So now YOU have to make sure that this is not an image campaign, that they will spend real money on cure.

Stay tuned for the next campaign when YOU demand more money for cure because in the end cure is the ultimate care and it beats the hell out of any wheelchair ramp.

A crank for cure!

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
******************************************

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

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

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

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

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

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!”