Is CDRF listening? Maybe, just maybe, they are.

SCI won't be cured by hyped up language but by science and the active involvement of those living with the horrors of paralysis and their supporters.

In November, I wrote an email to Mr. Peter Wilderotter the CEO of the Christopher and Dana Reeve Foundation (CDRF) in regards to a hyped up fundraising email which claimed that CDRF was, “Successfully getting people out of wheelchairs right now. Today, it really is a reality.”

Now, I don’t know about you, but when I hear statements like this it sounds like people are getting out of wheelchairs for good. A look through the research and what I find is that while it is helping people improve balance and even some ambulation; these same people are still using wheelchairs. Unless you try to be literal about it, this is not, “getting people out of wheelchairs,” in the way that most regular people would understand it.

I don’t like claims like this because they spread false hope especially amongst the newly injured and I told this to Mr. Wilderotter. I asked for an apology, but I think I got something much better. Looking at their next fundraising email, there was a fundamental difference in tone.

I’m heartened by the fact that maybe foundations do listen a little (after three years of campaigns aimed against this kind of behaviour).

This time, instead of making such broad sweeping statements that have no educational value whatsoever, Mr. Wilderotter listed three things that CDRF is working on which he thinks is important to both care and the future of cure. I would have liked some links in the email so people can see exactly what he’s talking about, but it’s a lot better than saying, “getting people out of wheelchairs right now,” without explaining the whole story.

To tell you the truth, I actually disagree with the importance of some of the three things Mr. Wilderotter raised, but guess what, I don’t mind disagreement. They don’t have to agree with me and I don’t have to agree with them. What I wrote to Mr. Wilderotter about was not disagreement over the statement, “Successfully getting people out of wheelchairs,” but that this statement is misleading, spreads false hope and miseducation, and makes people think that cure is much closer than it actually is. In the end, their message said, don’t worry about getting involved in cure, send us money and we’ll deal with it as we’re already getting people out of their chairs.

This is the wrong message. I hope CDRF does more in the future to involve those of us in chairs because I think it will help us all get closer to cure, but in the meantime, I’m happy that we MAY have sent CDRF a strong statement against wild comments that do nothing to bring us closer to cure.

Thank you Mr. Wilderotter (and I really do mean this).

PS. I spent some time this morning removing Bob's accusatory comments and the responses that others have made because they are pissed off with Bob's unending off topic comments about Dr. Wise Young.
From now on, false and/or off topic comments won't be allowed and this will stop the mean comments against Bob and his son (who doesn't have anything to do with this).

I understand that this is an emotional topic, but it gives no one, not even Bob, the right to make statements that they cannot back up.

Ho! Ho! Ho! And a Merry SCI

Ho! Ho! Ho! And a Merry SCI

Well my friends, I want to let you know that paralysis has not failed me this year either.

I'm back in the hospital with a new gift from spinal cord injury, an infected pressure sore. Never though I'd get such a bad pressure sore as I try to take care of such things, but I guess spinal cord injury wanted to make sure that I tasted as many secondary issues as possible.

There are some, who after a disability injury or illness, talk about how it has made them a better person. Well, there's nothing I can do except believe what they have to say and keep waiting for it to make me a better person, too.

While I'm waiting for that better person to explode from my loins, I'd like to list up what SCI has brought me for Christmas.

Christmas 2009: at the rehab hospital after I was left crippled from a bleed in my spinal cord.

Christmas 2010: luckily I made it out before Christmas that year even though I had a second operation for an arachnoid cyst.

Christmas 2011: at the rehab hospital after an operation for syringomyelia.

Christmas 2012: my kids got to enjoy having their father around for the second Christmas since paralysis.

Christmas 2013: the kids thought I'd definitely be home for the holidays, but unlucky us. My new infected pressure sore will keep in the hospital over the holidays.

I know that there are those who've had it worse, but the point is to make sure this horror doesn't happen to others, and not compete about who's had it worse. It's a terrible thing regardless of how you slice or dice it.

So, let's stop talking about how SCI can make us better. Let's make others understand how SCI robs not only our lives but the lives of those around us. Let's hope for future Christmases without paralysis.

Dennis Tesolat
www.StemCellsandAtomBombs.org
BlackBerry from DOCOMO

The $5 "Cure Videos" Challenge

Many of you know the group Unite2FightParalysis (www.U2FP.org) and the wonderful yearly conference they put on called Working2Walk (www.W2W.org).

There are many like myself who would love to attend and hear the exciting presentations made by scientists and activists in the fight to cure paralysis. Well, flying from Japan, booking a hotel, and all the costs associated with out country, or even out of city travel, doesn't fit into my budget.

But does U2FP leave me or you out just because we can't afford the time or money? No, they make sure that the presentation are available to ALL of us for free on the internet.

Click here to watch the videos. You'll be asked to log into your account and you'll get a password for the videos. If you don't have an account, you can log in through your facebook or twitter account, or create a new login. Whichever way you do it, you'll get a password which you can use. 

 Although they make it free to watch, it's not free for U2FP. I have learned that making the videos available to us for free costs them about $5000 for the videographer and then many many hours in volunteer time to get them ready for the final upload and editing. So I'd like to make all the video presentation viewers out there a simple, cheap challenge. From now on, every time I watch a 2013 video (the first time) I'm going to donate five bucks, and I want you to do the same. There is a donate link on all the videos which you can access after registering to view (registering doesn't oblige you to donate). You can support U2FP and their work to find a cure for spinal cord injury for as little as $5, and supporting cure is a lot better than any of the other things you can buy for a fiver. Of course, if you think that $5 at a time is a pain, please feel free just to make a larger, one off donation. 

Hope you take the challenge!

Part II: The International Association for the Advancement of Creative Maladjustment"

This is the second posting of this below post and it's one of my favourites.
It came back to me tonight after I discovered a second high fever in as many months. This is just after having to be in bed three weeks due to a pressure sore. I have no cold symptoms so I know that it's an infection in my paralysed body.
Don't ever let anyonr tell you that we can adjust ourselves to paralysis. It's a lie. Regardless how much we try, paralysis was never meant to be adjusted to by the human body.
Enjoy the repost and I hope you'll join me!
As a trade unionist and socialist these words by Martin Luther King always rang true to me.
"I never intend to adjust myself to segregation and discrimination. I never intend to become adjusted to religious bigotry. I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few. I never intend to adjust myself to the madness of militarism and the self defeating effects of physical violence."

And I guess now that I am a new paraplegic these words ring even truer.
After listening to this after a long time, two recent blog posts came to mind.
One was an imaginary conversation I had at my 'Spinal-Cord-Injury-group-therapy' with my counselor.
Counselor: "If you don't accept your lot in life, you will never adjust."
Dennis: "I'm not really interested in adjusting to this life. I'd rather fight for the cure. Not just because I want one, but because it's possible."
Counselor: "Then you my friend are maladjusted and you get an F in group."

And the other was a blog post written by a friend and how he was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury." Basically he was called a maladjusted, too.
In the year 2011 is it right that we are still trying to adjust ourselves to paralysis when we have excellent results in animal studies and clinical trials in progress to cure paralysis? Actually, the thinking that we should adjust is what is stopping the cure.
I appreciate all the work done by those before us, who have struggled for better accessibility, chances at employment, etc, but as long as we continue to think in 2011 that paralysis is something that you adjust yourself to, the further we will be away from a cure.
The image of the 'happy roller' rolling through a successful life in the chair, is a myth.
For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%. And to this I never intend to adjust myself.
For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability. And this I never intend to adjust myself to.
For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury." I never intend to adjust myself to a lower life expectancy than others.
For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless. And to this too, I never intend to adjust myself.
If refusing to give up hope for a cure, when evidence supports it, is to be labeled maladjusted, then I too am a maladjusted and I'll throw my hat into the ring of "The International Association for the Advancement of Creative Maladjustment".
Dennis Tesolat
www.StemCellsandAtomBombs.org
BlackBerry from DOCOMO

A cure for SCI by the Christopher Reeve organisation?!?!

I wrote a blog post a year or so ago called 'A cure for spinal cord injury will not be announced on this site'.

Apparently, it should have been called 'A Cure for SCI will BE announced by the Christopher and Dana Reeve Foundation (CDRF) on my blackberry'.

Just a few minutes ago I received an email from CDRF telling me that they are now, "Succesfully getting people out of their wheelchairs right now. Today, it really is a reality."

Right after that the little red blackberry light lit up with emails from my blog followers. There were two groups. One that wrote to tell me how great this is, and the second group who were pissed off that CDRF could even state something like this.

Wow!

Yesterday I was crippled and 'right now' I can get out of my wheelchair. What a load of crap aimed entirely at fundraising.

First they get Christopher Reeve's kids to state that CDRF's NeuroRecoveryNetwork (NRN) using epidural stimulation is the thing that Mr. Reeve would have been most proud of and then they link it to "getting people out of wheelchairs".

Most importantly, the NRN is not getting people out of their wheelchairs with all the implications this means; secondly, how do we know what a dead man thinks?

Of all the hype, false hope, and unabashed fundraising, this one takes the cake. Not only will people be fooled by this false announcement, they will feel let down when they realise that it's not true. This is the worst disservice of all.

I know what they'll say to spin it. They're going to say that it ONLY means people standing up, from time to time, on their own. And that it means people may be stepping, but this is NOT 'getting people out of their wheelchairs'. The vast majority will take this statement to mean CURE - permanently out of their wheelchairs. Why? Because the biggest SCI injury foundation on earth has declared it.

This false hope to raise donations, and using Christopher Reeve's kids to do it, is the worst display at a money grab that I've ever seen in the CURE communuity.

I won't argue with them about the benefit of NRN on the paralysed body, but it is NOT 'getting people out of wheelchairs'.

So before I comment any further, I will ask the CEO of CDRF to comment on this claim. If they are truly 'getting people out of wheelchairs', I'll eat my hat and kiss CDRF's CEO on the lips in Macy's window.

Dennis Tesolat
www.StemCellsandAtomBombs.org
BlackBerry from DOCOMO

A cure for chronic paralysis in Canada - we need YOU!

I think we've come a long way from writing questions to the Rick Hansen Foundation about chronic cure spending and getting no answers. I believe that we have finally put cure for CHRONICS on the agenda.

How many remember the first campaign back in 2011? One hundred names and no answer about cure spending. We took a lot of heat from some people about questioning RHF's commitment in dollars and science (not words) to a cure for chronic spinal cord injury, but in the end, a lot of these good people added their names to our last public campaign in mid 2012 to get us up to almost 800 names.

This blog isn't a trip down memory lane; it's to congratulate YOU for your perseverence because it finally looks like the times are a changing.

We have started talking to the Rick Hansen Institute (this body is the translational research arm) again and maybe their announcements have some good news for us, that may never have happened if YOU hadn't kept sending in your names and demanding a focus on paralysis cure, especially for those of in a chair right now.

1. RHI has set up an actual CURE committee. This will be comprised of researchers (still waiting on the names) and will be headed by Brian Kwon. I like Dr. Kwon because what I see in this video where the presenter tells us how Brian Kwon convinced her that chronic spinal cord models need to be used in research. Chronic, that's all of us who sit in our chairs right now. This is the first time we've seen a clear committee established inside of RHI to deal clearly with cure. 
The cure committee has already met once and we wait to see what they did in their meeting.
We've also asked for a chance to speak with Dr. Kwon and we hope that there will be good news to share with you in the future.

2. A Consumer Advisory Board will also be established. Consumer, that's us, people in chairs. The whole Board won't be cure focused, but we need to make sure that cure activists are involved. We need to make sure that when surveys get pulled out saying that we're not interested in cure, we can show them differently. 

We've now spoken with the people to be involved in the Consumer Advisory Board and we're waiting on some more information, especially on we can make sure that chronic cure activists are on this committee.

So, instead of just waiting around for RHI to cure us, we're going to remain, positive and proactive, following the pattern that has brought us success, and not waste our time debating those who think we haven't made any progress yet.

So, jump on in with both feet. Just like our past campaigns, only YOU can make this successful.
Fill in the form below to offer your suggestion for a name and if you're Canadian, to volunteer to help.

Message to the Governor of Minnesota: We want cure!

Just two minutes of your time can help lead a cure to spinal cord injury across the world.

I know what you're going to say.

"Dennis, we already lost twice in California."
"Dennis, we already lost this once in Minnesota."
"Dennis, how many faxes and emails do you want me to send?"

My answer is that I want you to fax, email, write, shout, and campaign until we have cured this hell that is called spinal cord injury. 

If a fax tires you out, well, my friends, I don't know what I can rely on you to do. So here we go again and I hope you're with me and our brothers and sisters in Minnesota as you have been through all the campaigns. 

Here is the request from my good friend Matthew out there in Minnesota. He wants you to fax the Governor of Minnesota and tell him to support the Spinal Cord Injury/Traumatic Brain Injury SCI/TBI Research Grant Program.

Here's what Matthew has to say:
Next week several of us will be meeting with Governor Dayton’s healthcare policy adviser, Lauren Gilchrist, to make our case for the Governor’s support. Here’s where we need you. Below is a letter that gives a general description of what we need, why, and why its of benefit to MN. We’d like to see a strong show of support before we walk into that office. Its important that the Governor know that we speak on behalf of all those with SCI and TBI who seek an improved quality of life.

So follow the information below and send a fax to the Governor.

If you don't have a fax or don't want to spend the money faxing to California, you can use

THE FREE ONLINE FAX FORM by filling in the form below.

Don't put this off as it only take about 1 minute. If you have your own fax, you can fax it to 651-797-1850.

Here's what you can can just copy and paste into the ONLINE FREE FAX FORM.
____________________________________________

Dear Governor Dayton,

     Please consider supporting our efforts to publicly fund the research that seeks to find curative therapies for the paralysis that results from spinal cord injury and traumatic brain injury.  We are seeking your aid because the research is ahead of the money. The last decade has seen significant advances in understanding both the mechanism of injury and the obstacles to regeneration resulting in several human clinical trials at play this year. Unfortunately the small number of individuals suffering from paralysis as a result of  SCI alone (roughly 1.2 million across the U.S. and 10,500 in MN) results in a lack of financial incentive from the traditional pathways of drug/therapy discovery. As a result we are seeking the injection of public funds to further this important research.

____________________________________________

Also, if you're in Minnesota, please make sure the Governor knows it.
Got more questions? Please send an email to matthewrodreick@u2fp.org

This campaign has ended. Thank you for all your help!

California cure paralysis bill vetoed again

Once again the governor of California, Jerry Brown, has let down the paralysis community by vetoing the Roman Reed Law (AB 714). This was despite the fact that the bill had only three votes against in both houses. Last year the same governor vetoed the bill after it passed both houses. His reason then was that since the money was raised by a one dollar surcharge on moving vehicle violations, it led to fee-based government. Governor Brown believed then that the money should come from the general fund, not fees levied against Californians.

So this year, the Reed's changed the bill to do exactly as the governor wanted. The bill asked for $1 million from the general fund but he vetoed it anyway. What's his reason this year? Haven't heard yet, but I bet it will be a doozie!

Roman Reed made this comment to you who signed the card to the governor.

"To all of you brave souls who took a stand and sign our card to the governor I thank you dearly.

Under normal circumstances are response should've been enough, unfortunately the governor vetoed us.

So we're to have to double our efforts. I will be running for State office and will be introducing this bill again and we will have her cures come hell or high water we will find a away to cure paralysis.

I am Roman Reed and you have my word that we will not stop until we are walking again."

I am happy that Roman is continuing his struggle to cure paralysis, and I hope that we can all continue to support his efforts.

Dennis Tesolat
www.StemCellsandAtomBombs.org
BlackBerry from DOCOMO

Finally, we can set our own priorities! Read this before taking the survey.

The UK's Stoke Mandeville Spinal Foundation (SMSF) together with the The James Lind Alliance have come together to provide a unique opportunity for the spinal cord injury, cauda equina and transverse myelitis communities to shape the future research priorities by conducting priority setting survey.  The survey is not only open to individuals living with those conditions but also families, carers, health and social care professionals.      

So what does this mean?  And why should I care?  Well, for one it’s incredibly important for everyone in the Community to take the opportunity to express what they really want the answers to.  What is it that means the most to you?  What answers would make the biggest difference to your life?  Secondly, this is a rare opportunity for opinions to actually count as the results of this survey could well serve to dictate how funds are directed in the future.  As we know that research funds in this field are not exhaustive, it’s vital that the results of this survey deliver a realistic and honest view of our desires and needs.     

The context of this particular survey is 'Quality of Life'.  Now, it’s important we take some time to analyse this term carefully before taking the survey.  'Quality of Life' is a term that is often used broadly by stakeholders within the Community and often such broad statements can serve to dilute or detract from the underlying factors of a complex multi-dimensional problem such as SCI. 

WHO defines 'Quality of Life' as the individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.        

Incidentally, this isn't the first survey that the SCI Community has had the opportunity to be involved in and it certainly won’t be the last.  One of the most notable surveys conducted in recent times was by Dr Kim Anderson at Reeve-Irvine California (she’s now based at The Miami Project, Florida).  This particular survey was specifically designed to rank specific functions in order of importance to the individual and their quality of life.  The individuals were asked to rank arm/hand function, upper body/trunk strength and balance, bladder bowel function, elimination of dysreflexia, sexual function, elimination of chronic pain, normal sensation and walking movement in order of importance. 

Unsurprisingly, the results of this survey were fairly predictable.  Quadriplegics saw hand and arm function as a priority and paraplegics saw bowel, bladder and sexual function as the priority.  Both quadriplegics and paraplegics shared bladder/bowel and sexual function as high priorities whereas paraplegics desired walking movement as a bigger priority than quadriplegics.      

Are you nodding your head in agreement so far?  All pretty obvious stuff so far right?  

Now, before all of you quadriplegics go rushing off to complete the survey with 'give me hand/arm function' or all of you paraplegics ask for answers to your 'incontinence issues' can I encourage you to take a step back (no pun intended) to have a look at the categories once again and in particular the underlying cause of each:

       

There are also some additional functional categories that could be considered such as elimination of spasticity or ability to breathe.  Again, these are due to a common theme – irreversible damage to the spinal cord.  When you consider that spinal cord injuries are so diverse and the outcomes so varied are we actually getting the priorities right when ranking these functions in order of importance? Should we even be ranking these functions at all?   

Rather than ask for a solution to a symptom(s) that we are facing in this current moment how about we look to find a solution to the underlying cause? Could it be that the real question we want to ask is 'how can we repair the damage to the spinal cord to restore function?'  Wouldn't this be more a more compelling and unified statement from our Community and one that would result in more research funds being directed to regeneration and repair of the damaged cord rather than scattered projects researching symptoms?     

'What about pressure sores?!' cry health and social care professionals?  What about 'osteoporosis, infertility, depression, obesity, cardiovascular disease, type-2 diabetes, urinary tract infections, unemployment, social isolation, poverty and suicide'? Yes, admittedly these are massive ongoing issues amongst the SCI Community and constitute a massive burden on our health systems.  And yes, there is probably lots of new research that could be undertaken in these areas to improve quality of life and reduce some of those healthcare costs.  BUT, almost all of these issues are as a result of a loss of function, independence and well being to the individual.    

A wise man, who has worked at the sharp end of the SCI field for over 30 years recently claimed that Care for individuals in the SCI Community has infinite bounds and that it’s high time that we acknowledged Cure is the ultimate form of Quality of Life.  A very interesting and profound statement from a well-respected clinician and researcher in the field. 

What does he mean by infinite bounds? It means no matter how many carers you have, how big your financial compensation package is, how light your wheelchair is, how many accessible shops and restaurants there are, how much rehabilitation is available to you, how many incontinence products available to you and how much assistive technology is available – it cannot ever compare with the gains in health, independence and well being resulting from the return of function.    

And with this in mind, I’d like to leave you with the following statement before you complete the survey:

The repair of the chronically damaged spinal cord is the ultimate form of Quality of Life for the SCI Community!

I strongly urge you to take part in this survey and more importantly, ask the right question ie how can we repair the damaged spinal cord to restore function? 

The survey is here.          

Access to the previously published Reeve-Irvine paper and survey can be found here.

_________________

The only thing that I can take credit for in the writing of today's blog post is the good sense to have let someone else write it in a much more eloquent way than I ever could.

-Dennis-

SEND A FREE ONLINE FAX to Governor Jerry Brown and tell him to sign the Roman Reed Bill

First I'm going to thank all of you who already signed our CureParalysis card to the governor, and now I want you to do one more thing. SEND A FAX to the governor and ask him to sign AB714 (the Roman Reed bill) into law and add a million dollars a year to paralysis cure funding.

If you don't have a fax or don't want to spend the money faxing to California, you can use

THE FREE ONLINE FAX FORM by filling in the form below.

Don't put this off as it only take about 1 minute. If you have your own fax, you can fax it to 916-558-3160.

Don't know what to say? Well, be brief and just tell him that you are expecting him to sign AB714 into law.

Here's what I'm sending and I've bolded the part that you can can just copy and paste into the ONLINE FREE FAX FORM.
____________________________________________
Dear Governor Brown,

My name is Dennis Tesolat and I live in Osaka, Japan and I'm a paraplegic. I was one of the people who helped organise the CureParalysis card that I hope you'll see. In it 500 people from many places, including California, signed the card in the hope that you will sign AB714.

Please sign AB714 into law; do not veto it like you did last year. I wasn't happy when it was vetoed last year, but I could understand your reasoning against fee-based government. This year, as you know, the bill asks for $1 million from the general fund, so based on your thinking last year, you now need to sign this bill into law and bring hope to the paralysed all over the world.

Thank you.
____________________________________________

Also, if you're in California, please make sure the Governor knows it.

Campaign has now ended. Thanks for your support.

California governor to decide fate of paralysis research law

We're almost there.

For those of you who have followed our campaigns to restore funding to the Roman Reed law for paralysis cure research in California over the last two years, we're now at a crucial time.

Yesterday, the bill passed the final stage of the legislative process by passing the full California Senate 39 to nil. This means that the bill now moves to the governor's mansion where he will need to sign it before becoming law.

We knew this day was coming so we were busy over the last few months getting people to sign our "CureParalysis" card which I sent to California last night. About 500 people signed from all over the world and we hope that when Governor Brown gets ready to sign that he first reads the pleas of people for a cure for paralysis.

With fingers crossed.

For a more thorough history of the Roman Reed law, please see Don Reed's article at StemCellBattles.

Paralysis cure bill almost there, but you're help is still needed. Sign "Cure Paralysis" Card.

Keep reading 

Roman's Law for paralysis cure in California has now passed the Senate Appropriations Committee. Yesterday it was passed by a 9 to 0 vote. 

This bill now has to pass the full Senate and then has to be signed into law by the Governor. Last year, the bill passed all the phases of the Assembly and Senate but it was vetoed by the Governor.

This year, Roman's Law followed the Governor's advice and instead of putting a levy on tickets to fund the bill, it's a straight request for $1 million per year from the general account.

We're now working on a GIANT "CureParalysis" card to send to the Governor so when the bill gets to his desk, he'll know the world is cheering him on to sign the bill into law.

You can sign the CureParalysis card below (if you haven't yet done so). We're now over 500, but still need your support.


For more information at Roman's Law, please see http://romanreedfoundation.com/new-ca-laws-ab714-ab666/

This campaign has now ended. Thanks for all your support.

Join over 400 others in letting Governor Jerry Brown know he is not alone in signing Roman's Law for paralysis cure into law

Last year Roman Reed and his supporters were able to pass legislation for paralysis cure funding through two Assembly committees, the full Assembly, two Senate committees, and finally the whole Senate. It would have added $1 to traffic tickets in order to restore funding to this important programme. In the end, Governor Jerry Brown vetoed the bill stating that funding should come from the general fund.

Roman Reed and his team took this advice to heart and this year introduced AB714 for one million in paralysis cure funding which will come from the general fund.

They've now passed the Assembly Health and Appropriations Committees, the full Assembly 69 to 3, and most recently the Senate Health Committee nine to nil.

While Roman works to make sure the bill gets through the Senate Appropriations Committee and the full Senate, we are working on a giant "CureParalysis" card for the Governor to let him know that we'll be with him when he signs the bill into law.

Over 400 hundred have already signed our card and stand in solidarity for paralysis cure. We still have time before this bill gets to the Governor's desk and hope that you'll stand shoulder to shoulder with us.

Sign the card and send your comments to Governor Jerry Brown.

This campaign has now ended. Thanks for all your support.

Hansen Group: They've learned to talk the talk

...Now, can they get us to walk the walk?

I have to admit that I was quite impressed by a recent announcement by the Rick Hansen Institute. Their new five year "strategic directions" plans seems just like what spinal cord injury cure activists have been campaigning for.

For now, I'll leave my judgement at "seems", but they sure have learned to talk the cure talk. Prior to this the Rick Hansen Foundation and Institute has sprinkled the "cure" word here and there but never seemed to have any kind of plan to cure spinal cord injury. It seems that this may have changed!

Not only do they seem committed to a cure for spinal cord injury, it looks like they also have a plan which entails spending for cure (along with care). They now talk about regeneration and even mention the word "chronic" spinal cord injury. "Chronic" means those of us currently living with the horrors of paralysis and they NOW talk about US.

I can't be 100% certain, but I don't believe that their old website ever talked about a commitment to cure chronic spinal cord injury. They've even set up a committee headed by Dr. Brian Kwon to deal with cure.

Another new buzzword(s) is "consumer engagement". Could this mean that RHI now wants our input?

We've spent two years asking the Rick Hansen Foundation and Institute questions about cure and now they seem like they're ready to answer.

I know that there are many cynics when it comes to the Rick Hansen group and cure, but I prefer to let my cynicism down and engage this new path with questions. You can see some of the questions we'll be raising in upcoming talks.

Let's see what one of the leading, world wide, SCI organisation is putting on the cure table before criticising. One of my "cure" comrades stated that they are doing all of this just to make us happy. My answer to this is that I'm glad they're finally considering our opinions, trying to "make us happy",  and making cure a true centerpiece in their efforts.

Please have a look at the recent announcement including our questions. If you have any more questions you'd like to ask, please let me know.

Roman Reed's request for support

I have been trying to offer the Reed's as much support as possible in winning new funding for the Roman Reed law to cure paralysis and Roman has sent a long a special request.

The Reeds appreciate all our help in sending our emails and faxes to support this law for a million a year in paralysis cure spending. Our work has helped in getting it through the California Assembley 69 to 3 and most recently 9 to nil in the Senate's Health Committee. They also appreciate all our great comments on the card we're working on to to present the Governor when the bill is ready for his signature (he vetoed it last time).

Roman is now asking for letters. Yes, the real paper and pen ones (well, the signature part anyhow). Roman's email with all the information follows below and he believes that a proper letter written to the California Secretary of Health will go along way in making sure the bill is signed this time.

So get out your pens and start writing!

Here's the information below.
________________________________
LETTER NEEDED FOR PARALYSIS RESEARCH BILL
Dear Friend of Research to Cure Paralysis:

May I ask you to write a brief letter to Diana Dooley, California’s Secretary of Health, in support of a bill to fund paralysis cure research ?

Assembly Bill 714 (Wieckowski, D-Fremont) would provide one million dollars a year for research to cure paralysis. The bill is moving ahead strongly, having passed the Assembly with overwhelming bipartisan support (68-3) and its first Senate hearing (Senate Health) with a 9-0 vote of approval.

The bill would restore funding for the Roman Reed Spinal Cord Injury Research Act. Although a highly successful program, renewed twice in 2005 and 2010, the second renewal came with no funding. The economy was facing difficult times, and funding was removed for budgetary reasons. We are trying to put it back.*

Last year our bill went all through the Assembly and Senate, but was vetoed by Governor Jerry Brown. He did not approve of our funding mechanism (a $1 traffic ticket fee increase) and said the program should be financed by the General Fund.

We have naturally taken his advice, and this year, if AB 714 passes,*California’s paralysis research will be paid for by the General Fund.
*
But we dare not leave anything to chance.

Our best hope to convince Governor Brown is through the Secretary of Health, Diana Dooley, whose opinion the Governor highly respects. We need to provide Secretary Dooley with letters of support.

Please send them by ground mail, on your group’s letterhead, with an email copy to me, please.

The Secretary’s address is:
The Honorable Diana S. Dooley,
Secretary, California Health and Human Services,
1600 Ninth Street, Room 460,Sacramento, CA 95814

Below are some information points which might be useful.***

Support for Assembly Bill 714 (Wieckowski, D-Fremont), spinal cord injury research

AB 714 would restore funding ($1 million annually) to the Roman Reed Spinal Cord Injury Research Act, (RR Act), named after a paralyzed Californian, Roman Reed.
*
Although the RR Act was successful (renewed twice by near unanimous votes), in 2010 California faced difficult times, and the funding for the program was removed. For both practical and humanitarian reasons, it should be restored.

Financially, the RR Act has made an actual profit for California. Over its ten year history, it spent $15 million of the taxpayer’s money—and attracted $84 million*in add-on grants from the National Institutes of Health (NIH) and other sources—new revenues for the state.

It has provided jobs for over 300 scientists and lab technicians, and is supported by the California Health Institute, the state’s largest biomedical organization, as well as other biomed organizations like Bay Bio and Connect.

AB 714 has strong bi-partisan support, having already passed the full body of the Assembly (68-3) and the Senate Health Committee, 9-0.

With new scientists having difficulty obtaining grants (the average age for receiving a first NIH grant is now 44) the program answers a real need. A scientist succeeding with a $20,000 or $50,000 grant from the Roman Reed Act can then approach larger agencies with a proven track record, that all-important initial data. Many young scientists have done exactly that, as can be verified by a glance through our key document, which can be downloaded at:

http://www.reeve.uci.edu/roman-reed-...ch-grants.html

While the overall program is administered through the UC system, the Roman Reed Core Laboratory is run by Dr. Oswald Steward at the Reeve-Irvine Research Center at UC Irvine. Here scientists can learn how to run a spinal cord injury research experiment, with access to the latest equipment, including a half-million dollar microscope. Here too, patients and advocates can meet with scientists and discuss mutual concerns and suggestions. Twice-annual “Meet the Scientists” nights are well-attended and productive.

RR Act researchers have produced 175 published scientific papers, each a piece of the puzzle of cure.

The problem is gigantic. America’s 5.6 million paralyzed children and adults (nearly 2% of the population, roughly one in fifty) are currently told there is no hope they will get well: ever.

The financial burdens are staggering. The medical costs of just the first year of a paralyzed person’s care? Roughly one million dollars, the price of the entire paralysis program.

Lifetime medical expenses for a paralyzed individual can reach $3-5 million, forcing many paralytics onto governmental relief. One estimate of the hidden costs of paralysis adds up to $5 billion a year for California alone—the equivalent of $131.57 from every child and adult in the state. (based on 760,000 paralyzed Californians, and a conservative cost assessment of half a million dollars lifetime medical costs, over a 70 year life span.)

On a positive note, due to the centrality of the spinal cord, research on paralysis offers benefits to all nerve-related disorders: traumatic brain injury, Alzheimer’s, ALS, Parkinson’s, multiple sclerosis, spina bifida, muscular dystrophy, spinal muscular atrophy, and more.

One of the projects California funded involved the first use of President Bush’s approved embryonic stem cells, and was so spectacularly successful it was featured on the 60 MINUTES television show. But only 4 of 129 projects involved the special cells; most of the work funded is “the everything else” which must be done for therapy and quality of life issues-- everything from skin sores which can rot the flesh down to the bone, to potentially fatal blood pressure irregularities, to bowel, bladder and reproductive problems, chronic pain, the need for low-cost rehabilitation methods—the program takes on many challenges.

One key component is the need for advanced (and less expensive) rehabilitation therapy. For instance, you may have seen paralyzed Superman Christopher Reeve being hoisted over a treadmill, and having his feet moved by attendants. This is not cheap. But the RR Act has been developing ways to use robotic shoes to move the feet, so the patient can do his/her strenuous workouts in safety, and without the need for as many attendants.

Even the smallest progress can mean a major improvement in patient quality of life. For example, when Roman Reed regained triceps muscle function on the backs of his arms, that allowed him to drive, instead of needing a paid attendant. Such cost savings can be astonishing.

Do you have the right to question Rick Hansen?

I have posted this blog and also sent it to a Mr. Cam Tait from the Edmonton Journal who runs a blog called Tait Talk where the two blog posts I mention below are published. I've asked to also be a guest blogger offering a counter argument from someone who has dealt with the Rick Hansen foundation for a number of years.

I also urge you to make your own comments directly on the blog posts in question by following the links below.

_____________

I have spent two years organising members of the spinal injured community to seek answers from the Rick Hansen Foundation about their real spending on a cure for spinal cord injury, and especially chronic spinal cord injury, and we have never ever been provided with this figure.

We asked about future plans including projects and spending, and were never answered with any numbers. When you can't get an answer to a simple question from an organisation which raises funds for "a world without paralysis after spinal cord injury" people really start to wonder about the financial stewardship of public funds and donations.

I don't think any of us were surprised after reading David Baines' story in the Vancouver Sun pointing out an $8.1 million deficit (at the end of their 2012 financial year), gratuitous self-promotion, and Mr. Hansen's own bloated salary.

What I was surprised by was two blogs written by guest bloggers on Tait Talk run by Cam Tait of the Edmonton Journal.

The first blogger, Ms. Marie Renaud Martin, almost knocked me out of my chair when she talked about Hansen falling short of his fundraising goals.

Falling "short" is one of the biggest understatements I've heard in a long time. They spent 17 to 19 million with a goal of raising 250 million but in the end only 84 million was raised. Well, you may say that they more than quadrupled their initial outlay, but then if you look at this 84 million, you start to see that most of it was simply a renewal of existing funding. In fact, RHF's revenues did not see any significant change pre and post 25th anniversary spending, but instead they are now saddled with a deficit.

So how does Ms. Renaud Martin defend this? She says, "So what?"

Well, Ms. Renaud Martin is very generous in her forgiveness because she states, "He has given his adult life to raising awareness." And then goes on to disparage Baines' article by questioning how much positive impact he has had on the world.

I myself say; so what?

How does this let Rick Hansen get off for his troubling financial stewardship? How much money is he allowed to be off because he is a good guy? I would love Ms. Renaud Martin to supply us with a figure. To her, Rick Hansen's salary is of no concern, so again I would like Ms. Renaud Martin to offer us a salary figure that she would consider to be too high. In fact, Rick Hansen is paid at least $50,000 more than the highest paid charity executive in British Columbia while all other BC charities paid less than $300,000.

The second post written by Ron Plant is even more shocking.

First he questions Baines' motive in writing the article as if there was some deep dark reason for writing the story in the first place, even though Mr. Plant doesn't even suggest what that motive would be. Well, Mr. Plant, that's what investigative reporters do. Should he have written another media/Rick Hansen love fest piece?

But what is most shocking is that Mr. Plant questions Baines' and even your own right to ask for full transparency from this organisation which is funded by tax dollars and private donations.

He asks, "What business is it of David Baines, how the Rick Hansen Foundation is run, or what compensation Rick Hansen receives?" And then goes on to say that Mr. Hansen does not owe the public any explanation.

Wow! Does he know what he saying? That would be like arguing that the current Senate spending scandal has nothing to do with the average taxpayer. Again, Mr. Plant gives Hansen a pass because, "Rick Hansen is a man who has made huge strides in affecting public perception of persons with disabilities." I'm sure that we could get a few people to say good things about the current Prime Minister and then I guess Mr. Plant wouldn't be bothered if Stephen Harper raised his salary to 400 thousand a year.

Both these writers offer no facts, just emotion. They remind me of those who questioned our right to ask for financial information about cure spending. The arguments were the same. Because they had no concrete reasons to challenge our campaign questions for financial transparency, they appealed to simple emotion. In fact, Rick Hansen himself, when asked our questions face to face at a conference, challenged our right to question by basically asking us how much money we have raised. Mr. Hansen and both of the writers forget that the money doesn't spring from some Rick Hansen well, but comes from me and you through taxes and donations.

We all have a right to ask for information about OUR money and money raised in cure's name, and we should never allow emotion to overrule our minds and do what is right when it comes to both money and a cure for spinal cord injury.

To read David Baines’ full article, please click here.

To read a summary with charts of Mr. Baines’ information, please click here.

Once again, I invite you to make comments directly on Ms. Marie Renaud Martin and Ron Plant’s blog posts. Let them know that their thinking is out of line with the rest of society.

Questionable Hansen Foundation spending exposed - Vancouver Sun

Read the Vancouver Sun Article -
Behind the Rick Hansen Foundation

I read the article with great sadness.

Even though many of us knew that there was waste, I don't think any of us imagined the extent of it.

I wish that I could feel content that our position was vindicated; that we weren't just angry cripples who were pissed off at Rick Hansen because we were paralysed, but saddened is the only emotion in my heart. Not just by the waste of money, but also because this kind of scandalous spending kills hope.

We spent a lot of time asking for transparency on cure funding, and I guess when they couldn't do that, alarm bells did sound in many of our heads. Was it because they simply weren't spending on a cure for chronic spinal cord injury, or was it just sheer arrogance on their part by refusing to share data they felt we had no right to ask for? We'll never know for sure, but this article clearly makes it look like it was both.

Still, we took the high road and didn't attack Hansen personally, we kept our eyes on the ball about chronic cure spending and regeneration. Our goal was not to discredit RHF or void Rick Hansen's contributions, but to make make sure that money was actually being spent on "a world without paralysis after spinal cord injury".

Even so, we were still castigated. We were told that we would hurt RHF's ability to raise donations and now ironically, it is RHF by their own hand which will kill off donations and make us suffer through a loss of research dollars for all organisations as stories like this hurt everyone. It is Rick Hansen, who had done so much, who has discredited himself and if he refuses to change will end voiding his own legacy.

Now it will be our job to rekindle hope. To demand a change of leadership. To demand money be spent on measurable outcomes, not "raising awareness". To demand more transparency and community involvement.

I hope that those who read this article don't come away cynical but rather become involved in demanding change from all organisations that raise funds in our name.

More on this story in the very near future.

Sign our 'CureParalysis' card and tell Governor Jerry Brown the truth about spinal cord injury

Our newest campaign to present a 'CureParalysis' card to Governor Jerry Brown has gained a lot of attention from those living with paralysis.

AB714 (Roman's Law) is asking for a million dollars a year for paralysis cure research in California and has already made it through the Assembly and is is head through the Senate where we hope it will get passed. The next step will be the Governor's desk where he will either sign or veto the bill. Last year, he vetoed it.

This year we want you to sign our giant 'CureParalysis' card to the Governor and leave your comments telling him why you want paralysis cure. Feel free to share with him not only your hopes and dreams of a cure for paralysis, but also the real horrors of paralysis.

Today I'm leaving you with a few comments that some have already made and urge you to share your heartfelt desire for a cure. Please sign below to add your name to our 'CureParalysis' card.

This campaign has now ended. Thanks for all your support.