11 November 2011

Enough With the Rats!

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.

07 November 2011

Nothing a good game of basketball can't cure

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.

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.

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!

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