29 February 2012

Response to recent Rick Hansen interview - no more ramps please

After the recent announcement by the Rick Hansen Foundation (RHF), I had promised myself that I wouldn't be writing another letter to the newspapers about this group until an email that I sent to the CEO had a chance to be answered. I figured that we were making progress so another fair chance to answer was warranted.

Well, I couldn't let a recently published interview with Mr. Hansen in the High River Times go unanswered. 

So without going into further detail, I will let my Letter to the Editor speak for itself and will let you know if and when it's published.

Dear Editor,

I read your interview with Mr. Rick Hansen, Hansen: Relay a great success so far, with a certain amount of disgust.

Being one of the most well known people in Canada he had a chance to educate people about the breakthroughs being made in central nervous system (CNS) regeneration, i.e., a cure for spinal cord injury (SCI). Instead, he spent his time talking about “wheelchair parking, ramps, and curb cuts.”

He goes on to tell us about those with SCI being, “in politics, media, teaching, and a part of society.” He makes it sound like those of us in chairs have almost got it made and don’t need a cure, just more understanding. But a report done by his own organization, the Rick Hansen Institute, tells us that 60% of those living with SCI are unemployed. Of course Mr. Hansen does state that it’s, “not everyone.” Not everyone? At 60% unemployment, it’s not even half of everyone with SCI.

He calls, “meeting someone in their late-twenties who has a spinal cord injury and to see them in a photo where they were beside me during the original tour (twenty five years ago),” progress. This is not progress but rather the sad evidence of society’s failure to make a cure for SCI a top priority. You cannot cover the world with ramps and curb cuts, real progress for those living with SCI is a cure.

The failure to make this cure possible is not only the fault of Mr. Hansen, but as a man who controls one of the largest SCI organizations in the world and millions in public funds, his words in this interview clearly show why we have not yet achieved a cure.

I ask Mr. Hansen to make a cure for SCI the number one priority of his organizations and to make money available for this end. I would also like him to publicly state the total percentage of  funds being spent by his organization to cure spinal cord injury as he has never answered the over 300 people who sent emails sent to RHF asking for this information.

Words are nice, but figures and accomplishments are what count most to us living with SCI.

22 February 2012

A cure will not be announced on this blog

I want to tell you how irrational I am from time to time, especially on days when the pain and pins and needles are most intense. 

I actually log on to my favourite spinal cord injury bulletin board to check if a cure was announced while I was sleeping. Being that I am anywhere from seven to sixteen hours behind Europe and the west coast of North America I don't find it impossible (or don't want to find it impossible) that a cure could be announced while I'm sleeping in Osaka.

Laugh if you will, but it sure would be nice, and I'm sure that there are many just like me who log on hoping to find the cure announced. Why not? We were paralyzed instantaneously so why shouldn't there be an instantaneous cure? 

But after I really wake up, wipe the sleep from my eyes, and log on, I only find announcements of yet another research paper. Don't get me wrong; research papers are good, but I'll be clear, ONLY reading research papers for us non-scientists will not get us walking.

Understanding the science, if you can, is important and for those who are so inclined, understanding the science will even help the cure along, but millions of paralyzed people becoming amateur scientists is not the answer to the problem because the problem is not the science.

If you read my blog regularly you'll see that I have never doubted that science will solve the riddle of regenerating a damaged spinal cord, the only worry that I've ever had is that the science will not get to us, that it will stop at making chimpanzees walk for circus shows.

There are many barriers to the science:

  • Money for research and trials.
  • A lack of willingness by governments to make a cure for paralysis a priority.
  • Regulatory agencies which put so many hoops in our way that bringing a new therapy to trials becomes almost impossible.
  • Foundations that raise money for cure but spend it building ramps.
  • Propaganda that almost makes it sound like we're having a good time in our chairs so there is no need to rush.

...and many more.

I think it's these barriers that we in the paralysis community can smash down. Not sitting and waiting to be cured. Not sitting and waiting for regulatory agencies to give a green light. Not sitting and waiting while promising research languishes in the lab because of a lack of funding.

A common question on the board that I visit is WHEN (and then it's debated to death). I will stick my neck out and answer NEVER if we just sit and wait and read about science. 

I have often been told that those in the paralysis community aren't motivated, but I don't believe this. What bigger motivation than a cure is there for us? I also believe that being active will even make people more positive in their daily lives because instead of waiting, instead of asking when, we will be making 'when' happen. I think that the problem comes down to people not knowing how to do 'cure' or feeling that they can't have any impact.

So I would like to ask all of you involved in a cure to tell everyone what cure activities you are involved in. Basically, I want to hear how you 'cure'? Tell us what you do and why you do it. Motivate others to do the same and more. Let's build off your ideas.

So today I will end this post by asking one question.

That question is not on what you think should be done, that's important, but I want to start at a more basic point for now. Here is my question?

How do you DO 'cure'?

09 February 2012

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.