From the European Spinal Cord Injury Federation (ESCIF)

Good news from ESCIF!

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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

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.

If you haven't yet signed on to our fight to cure paralysis, you can do so by going here.
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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

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:

français

italiano

日本語

español

Россию

        

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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