Roman Reed Paralysis Act passes first step

Thank you to you and all of yours who sent emails to Sacramento, California in response to our call to support the Roman Reed Paralysis Act keep it's funding to bring about a cure for paralysis.


The Public Safety Committee has now passed the funding in a 4-2 vote, but we're not out of the woods yet as there are still four more steps.


Assembly Health Committee, then...
Appropriations Committee (this one is the key), and then...
A full vote in the Assembly, and...
A full vote in the Senate, and finally...
The Governor's desk to be signed.


And now I'll say it again.


The battle for a cure is more than a scientific problem; it's more of a political and economic problem.
This means your participation is key.


Keep up the great work everyone.

From some friends of ours in Italy

I just got an email from a friend who is very involved in the battle to cure paralysis. Great news!


One of the main Italian newspapers carried a story about their Facebook page, and the members' struggles to find a cure for spinal cord injury.


The whole article wasn't about the group, but to score news about a cure and their great picture, puts cure clearly in people's minds.


Just a short blog to celebrate my Italian friends and their work!


Even if you can't read Italian, Google can. So have a look here.

Cure paralysis bill needs your support NOW!

You can help lead the charge to cure paralysis by sending an email (see below) to the three California assembly members. We need your help to pass the funding for this very important piece of legislation by 27 March 2012.


Here is the information from Don Reed's Stem Cell Battles blog.
Last year, the funding was cut off for California’s Roman Reed Spinal Cord Injury Research Act. This is the law which funded the famous “paralyzed rats that walked again” stem cell research that Christopher Reeve so often talked about.
BUT– here is some great news!
Assembly Bill 1657 Roman Reed Research Funding Act (Wieckowski, D-Fremont) was officially filed today in California!
We need your support as the first committee vote (Public Safety) is next Tuesday, March 27th.  


We need one short email letter of support (see below)



Background:
The Roman Reed Spinal Cord Injury Research Act was first signed into CA Law in 1999. We provided State funds of 1.5 Million annually to be administered through the UC system to any researcher in CA working on SCI or closely related. Our program is operated at the UC Irvine Christopher Reeve Center and the Roman Reed Core Laboratory is supported within the Center and provides on-site equipment free of charge to new SCI researchers or collaborations.
Supported over 300 Scientists and staff, our program produced over 125 peer reviewed medical breakthroughs, and provided the initial funding to pioneer Dr. Hans Keirstead’s work with re-insulating the damaged spine– work that became the Geron Trials! 


Please send your one-sentence email today!


This campaign is now closed. Thanks to all for your support!!

Can you name them all?

Burning for a cure

I got an idea in my head the other day. With the increased burning in my legs crazy thoughts do come to me and I have to do a little bit of a reality check. The problems though with reality checks is they often stop you from doing what needs to be done.


So, I'm going to write about it and while I'm writing, I'm going to think about it, and at the end, I may decide to go ahead.


My idea goes a little like this.
1. Write to the ministers or secretaries or whatever they call themselves of Health in the G8 countries.


2. I'm going to invite them to a skype conference about curing paralysis. They get together about other stuff, so why not curing paralysis? I feel that this is an important enough thing that they can spare two or three hours for.


3. I'm going to empathise with their problems about limited budgets and then give them an idea that if they work together it will be cheaper.


4. When we work out a good time for the call, I'm going to get them to invite the top researcher from their own countries. If they don't know these people, I'll give them a list. There's no sense having a bunch of health ministers sitting on the phone together because they wouldn't know what to talk about, and since the first one who talks about ramps is getting cut off I have to make sure they got someone to listen to.


5. Then I'm going to call a few friends of mine and I'm certain they will attend. These are people who know stuff and especially why there is currently no cure for paralysis.


6. So at this point there will be scientists working on a CURE for CHRONIC spinal cord injury. They'll know about the science and what they need. There will be ministers of health who control money and all those regulatory bodies that can get in the way. And then there will be me and my friends who can tell everyone why it's currently not working.


7. Then we're going to dole out the homework and get together in another month to see who's done what and we're going to keep doing this until it gets done.


So tell me. Am I crazy? Does this have a chance to work? I think that they're going to ignore me and then I'll have to ask you all to write to them to organise this.


I decided to try. And so I don't bug others that I work with right now, I'll first see how it goes.
I might just be crazy enough to pull it off. And so I don't chicken out, I'm emailing this directly to my blog

BlackBerry from DOCOMO

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.

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'?