StemCells&AtomBombs

26 hours left to click for a paralysis cure

2012-05-30T21:52:00.001+09:00

This is a massive rush to make sure that the Roman Reed act to cure paralysis (Assembly Bill AB 1657) clears the California Assembly.

YOUR emails have already had this act clear the Public Health Committee.

YOUR emails have already got this through the Appropriations Committee (where the money is decided).

And now we need YOUR EMAIL to get it through the whole of the California Assembly.

Let's make sure that we make a cure for paralysis a reality by making sure we get a majority in the Assembly, and a majority means securing the votes of FIVE more Assembly members to GUARANTEE the passage of this act in the Assembly.

You can do it, but you have to do it now!

Email the following Assembly members to guarantee a majority!

This campaign is now finished and it passed the Assembly. More information to follow. Thanks for all the great support!

Rick Hansen 'answers'?!?

2012-05-26T17:28:00.004+09:00

Picture by: Urban Mixer (Raj Taneja)

Thank you to all of you who added your names to our appeal to Rick Hansen and the Rick Hansen Foundation (RHF) about their plans to cure chronic spinal cord injury. A cure for spinal cord injury may well stay beyond our reach until RHF, as one of the largest and most well funded spinal cord injury organizations world wide, gets behind a cure with their massive funding.

As a person living with paralysis or supporting a paralyzed family member or friend, you have the right to ask these questions about cure and receive an answer. You are one of Rick Hansen's constituents.

As a member of the global community you also have a right to ask, and Rick Hansen knows it, too. Twenty five years ago he set off on a world tour because he understood that spinal cord injury and paralysis touches everyone, regardless of where they live.

And as a Canadian, you have an even more unique right to ask and demand answers as RHF's funding comes from your pocket ($117.3 million since 1988 comprising almost 45% of RHF's total funding). When you in Canada ask, Mr. Hansen should be answering with a 'Yes, sir'.

Rick Hansen on the other hand believes that you have neither the right to ask or receive an answer.

When asked by cure activists, from their wheelchairs, at his recent Interdependence conference; that's right cure campaigners were on hand to make sure your questions were answered, he ducked, feigned, and swayed his way through his non-answer. He was like the Mohammad Ali of non-answers. When he couldn't non-answer anymore, he actually called your questions inappropriate for a public forum.

What's inappropriate about asking an organization which uses the slogan 'a world without paralysis after spinal cord injury' about their plans and spending on a cure for spinal cord injury?

Just so you think that I'm not making this all up, I was fortunate enough to receive a recording of the events from an anonymous conference attendee. He or she recorded the exchange between the cure activist and Mr. Hansen. The recording and possibly even video footage will be added soon.

Asked from the floor during a public Q&A about his plans to cure chronic spinal cord injury and the money he was pledging to it, he came out of his corner with that full Rick Hansen grin and a whistle on his lips. He thought he sounded clever, but anyone around him, especially those who know him personally, probably found it embarrassing as he totally evaded the questions.

He talked about his vision of an inclusive world. He talked about cure. He talked about the market and the availability of therapies to introduce into the market. He even had the gall to talk about us raising more money when he won't even tell us where it goes.

But he never once answered the question.

He actually said that how much he spends on cure all depends on how much he raises.
Let's face it, RHF has a budget, and while he may have whispered sweet nothings about the distant future, he could have been clear about his spending on a cure for chronic spinal cord injury in the past AND in the near future.

The person who asked the question described the answer as "disrespectful".

When the cure campaigner met Mr. Hansen on the floor of the convention, she thanked him for his "insulting answer". He snapped back that it was "a totally acceptable answer to a totally inappropriate question." He said that it was not the time or place to ask such a question in a public place and even accused the cure activist of being negative rather than going forward and being constructive.

When reminded by another activist in the room (there's more than one of us) that over 700 people asked this question, Mr. Hansen spoke even more nonsense. He wanted to know how much we have raised and that when we raise our own money, we can decide what to do with it.

Where does Mr. Hansen thinks his money comes from? Does he think it falls off the spinal cord injury tree?

Because the money comes from us. Because he asks for donations from anywhere in the world. Because the money is given to him in the name of 'a world without paralysis after spinal cord injury', we have the right to ask and be answered.

With this attitude of disregarding the questions of those he is meant to serve, it is no wonder that we are now hearing whiffs of discontent from those around him.

Soon they will also say what we've already said; the emperor has no clothes.

So do we leave this alone?

I say NO.

Let's make sure that your questions are answered in writing like you asked for. Let's make sure that your cure money is accounted for. Let's make sure that the voice of the paralyzed is heard over the roar of the Rick Hansen victory celebrations.

Let's make sure that other organizations understand that this sort of behaviour is unacceptable.

Together my friends.

We've come this far already. Let's make sure money raised for cure is spent on the cure we want.

737 sign the Rick Hansen appeal

2012-05-12T16:51:00.004+09:00

YOU have made our appeal campaign to the Rick Hansen Foundation the best ever.

Rick Hansen has been sent the questions that you signed your name to and now we will await an answer.

1. How much are you planning to spend in the next five years to find a cure for chronic spinal cord injury?
2. Which research projects (basic and clinical research) will be funded by Rick Hansen organizations to get people with chronic sci out of wheelchairs?
3. What is the Rick Hansen Foundation/Rick Hansen Institute's ability/willingness to fund promising science to cure chronic spinal cord injury both domestically and internationally?

Of course we all know that we've asked, but a press release has also been issued to the Canadian media and all of the main presenters at the Interdependence Conference have also been notified that we are waiting for answers.

I would love them to come back with a large list of all the things that they have done and are planning to do to cure chronic spinal cord injury. The only thing I would say then is thanks and "Why didn't you tell us when we first asked?"

In the meantime, you can also help spread the word by twittering our press release, putting it out on facebook, and even sending it to people that YOU know in the media or think would be interested. You can find the press release at http://bit.ly/RHFPR.

Thanks.

CURE for the Osaka Strut. So sign it!

2012-05-08T23:10:00.000+09:00

No one knows that I can really strut!

When we win cure, I promise that I'll take you on a tour of Osaka doing the Osaka STRUT!

What you got to do to win a front row seat to the Osaka STRUT is to SIGN!

ONE MORE DAY to sign for CURE for our appeal to:

Rick Hansen to stand on CURE's side. www.bit.ly/RickHansen

To the California Assembly to fund the Roman Reed cure paralysis act. http://www.stemcellsandatombombs.blogspot.jp/2012/04/hit-send-button-below-to-help-cure-for.html

Don't forget the Osaka STRUT!

Four more days to sign the Rick Hansen appeal

2012-05-05T21:28:00.000+09:00

Thanks to all the great work you all have done, almost 700 people world wide have added their names to our appeal to Rick Hansen. As the leader of one of the biggest organizations dealing with spinal cord injury in the world, we all want to know his plans to CURE chronic spinal cord injury.

Just getting 700 people to add their names to something like this is a victory in itself, but we don't want to stop here. If you have a few seconds, I'd like to give you three options to spread the word further. On Wednesday, Japan time, which is Tuesday for most of you, I will wrap this up and send it to Mr. Hansen and to the Canadian press.

Let's keep up the good work and see how many more we can get in the last three days.

Email is the best way to get your message across to your friends.
Launch your email and copy and past this short message.

I know you're busy and so am I so I just want to write a really short message. Paralyzed people and their supporters throughout the world have some very important questions to ask about a cure for chronic spinal cord injury. In one minute you'll be able to read the information and add your name at www.bit.ly/RickHansen. I already have and I hope you do, too. www.bit.ly/RickHansen.

launch www.twitter.com

Another great way for you to get your message across is on Twitter. Many people value this as a reliable place to get news and your followers would love to get your news about signing our appeal.
Just click the icon to launch twitter and copy and paste this short message.

700 have added their name to Rick Hansen to stand up for a cure for chronic spinal cord injuries. Add your name. http://www.bit.ly/RickHansen

launch www.facebook.com

Finally, everybody's favourite, FaceBook. Go to your status update and urge all of your friends to add their names to our appeal. Click the icon to launch FaceBook and copy and paste this message to your status updates.

Almost 700 paralyzed folks and their supporters have signed our appeal to Rick Hansen to stand firmly behind a cure for chronic spinal cord injury. How about you. www.bit.ly/RickHansen

Appeal to Rick Hansen - 5 days left - please sign

2012-05-04T18:30:00.000+09:00

The Rick Hansen Foundation (RHF) and Rick Hansen Institute (RHI) is one of the largest and well financed organizationdealing with spinal cord injury (SCI) in the WHOLE WORLD.

but…

There is a concern in the paralysis community about the RHF and RHI’s spending on a cure for paralysis.

In 2011 these concerns led to over 300emails being sent to RHF’s CEO, Mr. Art Reitmayer, asking for clarification.

SO WE ASKED A VERY SIMPLE QUESTION,

“Please outline your spending on translational research for central nervous system regeneration, i.e., a cure for spinal cord injury.”

We were shocked to find the answer void of any content. He answered,

“81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives.”

You can imagine the red flags that were raised by an answer like this.

So this time we want to forget about the past and ask Rick directly about RHF/I’s plans to get people out of wheelchairs and walking and we want an announcement made at the May Interdependence 2012 conference in Vancouver.

Help Rick strengthen CURE’s side by adding your name, along with over 600 people worldwide, to the following questions.

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

To: Mr. Rick Hansen

Re: Getting us up and walking

We want to be with you in your fight to cure paralysis so naturally we want to know if you’re really with us.

Please answer the following clearly in writing and publicly at the Interdependence 2012 conference.

A. How much are you planning to spend in the next 5 years to find a cure for chronic SCI?

B. Which research projects (basic and clinical research) will be funded by Rick Hansen organizations to get people with chronic SCI out of wheelchairs?

C. What is RHF/I’s ability and/or willingness to fund promising science to cure chronic spinal cord injury both domestically and internationally.

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

This campaign has now ended. Thank you for your support.

The May Day spirit to cure paralysis

2012-05-01T10:54:00.001+09:00

Add your name to our appeal

I know many of you in the paralysis world don't think about May Day like I do. In fact, some of you probably think that mixing May Day and cure is not such a good idea.

But from where I sit, I don't see a really big difference.

May Day was started by those who refused to accept the status quo. Just like us in the cure movement who don't buy into the position that we'll never walk again.

May Day is about people working together to improve their lot in life. How different is this from all our campaigns? We know that one voice will not get us out of our chairs. We believe in many voices singing in unison.

May Day is international. And on the left you can see all the people from different countries who have supported our campaign to the Rick Hansen Foundation and to the California State Assembly.

So now I leave you with the words of Frederick Douglass who was born a slave, escaped to freedom, and campaigned again slavery his whole life.

The next time someone tells you that sitting and waiting for a cure for paralysis is the answer, and that we should not raise our voice too loudly or boldly, please tell them what Frederick Douglass said.

"If there is no struggle, there is no progress. Those who profess to favor freedom, and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle."

So please remember to add your name to our campaigns!

Click to Cure - Roman Reed Cure Paralysis act

2012-04-29T14:36:00.003+09:00

Hit the send button below to help a cure for paralysis.

In March I told you about the Roman Reed Cure Paralysis act in California. This truly extraordinary act to fund cure research had lost it's funding and California cure activits were leading a campaign to resurrect the money.

A very simple idea to add one dollar to moving violating traffic offences is being proposed.

You can find out even more about this amazing act by clicking here.

We needed your support to get this truly neccessary act to get the through the public safety committee. You responded wonderfully by sending 230 emails in a few days and it passed the committee.

Now it's at the appropriations committee and if it fails, the green light to add the one dollar will fail. We need cure laws with money, not flowery words.

I urge you to send an email to Assembleymember and Appropriations Committee Chair Mr. Felipe Fuentes and ask him to vote YES.

We only have a few more days on this one so I want you to act immediately.

This campaign has now ended. Thanks to everyone for signing.

Another reason for adding your name to our Declaration of INterDEPENDENCE

2012-04-24T18:56:00.000+09:00

We're still adding names to our appeal to Rick Hansen and his foundation for a cure for chronic spinal cord injury, and we want you to add your name, too.

You can sign and never leave this page, just by looking at the end of this post.

Today, we have Barb from Canada who tells us why she signed and wants you to sign. It's not too late for you to listen to Barb and sign the appeal at www.bit.ly/RickHansen or at the bottom of this page.

So what does Barb say?

"As a C-1 vent-dependent quad, slogans about independence or wheelchair sports do not offer me much consolation, while a "research" budget almost void of actual cure efforts offers me no hope whatsoever. Where is the urgency? Where is the prioritization of clinical trials that will repair spinal cord injury rather than perpetuate it as a cottage industry? Anyone in my situation would be very foolish to question the value of sci quality of life and care research, but there must be a greater balance in resource allocation. The Rick Hansen Institute cannot claim to be a world-leading cure institute when it devotes so little of its considerable funding and support to the only type of research that will make "a world without paralysis after spinal cord injury" a reality rather than an empty catch-phrase. Please sign this petition if you agree."

This campaign has now ended. thank you for your support.

Thank you for signing our Declaration of INterDEPENDENCE

2012-04-24T15:23:00.000+09:00

Thank you to all those who have signed our appeal to Rick Hansen to ask about a cure for chronic spinal cord injury at www.bit.ly/RickHansen.

It's because of people like you that we are about to surpass the 500 person mark making this one of our best campaigns ever. So now I want to appeal to you to take just one more step to get more people to sign so that our appeal cannot be ignored.

Doing just one of the following will do a lot for the future of CURE.

Copy and paste this very short message and paste it on your Facebook page.

"I signed an appeal to the Rick Hansen Foundation asking them for a commitment to a CURE for chronic spinal cord injury. Now I'm appealing to my facebook friends to sign, too, at www.bit.ly/RickHansen."

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

Send an email to your friends. Studies have shown that direct appeals by email work much better than a simple post on Facebook.

"I'm just sending you a quick email to let you know about a campaign to CURE chronic spinal cord injury. I've added my name to the appeal and I hope you will do the same. You can sign it at www.bit.ly/RickHansen."

Declaration of INterDEPENDENCE - Sign it!

2012-04-19T12:24:00.001+09:00

Add your name to our appeal at www.bit.ly/RickHansen

To: Mr. Rick Hansen
Re: Getting us up and walking

1. How much are you planning to spend in the next five years to find a cure for chronic spinal cord injury?
2. Which research projects (basic and clinical research) will be funded by Rick Hansen organizations to get people with chronic sci out of wheelchairs?
3. What is the Rick Hansen Foundation/Rick Hansen Institute's ability/willingness to fund promising science to cure chronic spinal cord injury both domestically and internationally?

These are the questions. Now we want an answer.
***********************
The Rick Hansen Foundation (one of the world's largest and most well financed spinal cord injury organizations) is hosting the Interdependence global conference on spinal research starting 15 May in Vancouver, Canada.

This is a very good time for us to shout the cure message loud and clear so that it's not missed.

Many of you have already sent emails to the Rick Hansen Foundation demanding answers and your emails have already had a tremendous impact ( http://stemcellsandatombombs.blogspot.jp/2012/02/you-yours-and-rick-hansen.html ).

Now it's time to ask for more. We have put together a very good set of questions that we need answered and we're going to let the world know that we WANT answered and that's about Rick Hansen's plan to cure chronic spinal cord injury.

You can add your name to the appeal at www.bit.ly/RickHansen

But more than this, we need you to get this in the hands of your friends, family, coworkers, and even enemies to get them to sign. You can download a PDF of our flyer and send it on to your supporters, or just send them the link, www.bit.ly/RickHansen.

We've already done a lot with the Rick Hansen Foundation and now we need a little more push and success or failure lies in our hands.

This is NOT a campaign AGAINST Rick Hansen.
This is AN APPEAL TO Rick Hansen to strengthen cure's side.

This is our long march from INTERdependence to INdependence.

Today is when we declare to all the old paralysis orgs that they must march to the drum of cure regardless of how thankful we are for their past work.

Today is when we stand up.

This is not an appeal by the weak to the strong.
This is not an appeal that we make with bowed heads in hope that someone will help us.
This is an appeal made by those who are standing up and marching together towards cure.

It's up to us, my friends. So let's do it.
www.bit.ly/RickHansen

This campaign has now ended. Thank you for your support.

Roman Reed Paralysis Act passes first step

2012-03-31T17:47:00.002+09:00

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

2012-03-24T19:36:00.002+09:00

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!

2012-03-23T13:08:00.007+09:00

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?

2012-03-18T19:51:00.001+09:00

Burning for a cure

2012-03-08T19:29:00.006+09:00

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

2012-02-29T21:36:00.002+09:00

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

2012-02-22T16:32:00.002+09:00

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'?

YOU, YOURS, and Rick Hansen

2012-02-09T21:10:00.009+09:00

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!

2012-01-28T16:46:00.002+09:00

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

2012-01-18T21:09:00.017+09:00

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

2012-01-14T13:24:00.002+09:00

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

2012-01-10T12:37:00.005+09:00

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

2012-01-08T13:17:00.005+09:00

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

2012-01-05T22:05:00.000+09:00

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!”