Pants on fire!

Mr. and Mrs. Institute must be really ashamed of their son, The Rick Hansen Institute after the letter he sent me. Yes, I received a letter signed, Rick Hansen Institute (RHI). Now either it was signed by Mr. and Mrs. Institute’s son, OR, no one at the RICK HANSEN INSTITUTE was willing to take responsibility for the rubbish that was written in it so no one signed it. I tend to believe the latter as I looked on Canada411 and only found one person with the surname ‘Institute’ but that person was in Toronto.

Let’s go back a second.

Many of you will know that I have been involved in writing to the Rick Hansen Foundation (RHF) about their commitment to a cure for CHRONIC spinal cord injury. You’ll also know that they have NEVER NEVER NEVER answered this question.

You can see the whole explanation at www.bit.ly/HansenFoundation. 

So this time I wrote to the RHI to see about their spending and research since they receive $12 million of RHF’s $13 million that they endow on ‘outside’ organizations. The email I sent to Mr. Bill Barrable, RHI’s CEO, can be found at http://bit.ly/paperheroes. 

I was shocked that he would even dare say, "We believe that we have been very responsive to all your requests."

For one, we have never written asking questions to the RH INSTITUTE. They have only ever been cc'd into the questions. Furthermore, the responses have never come under the name of RH INSTITUTE except for our very first ask. Other than this, we have only ever received answers from the Rick Hansen Foundation and Mr. Art Reitmayer who was the CEO. 

So how can they in good faith write that they have, "always been responsive to our requests."

Are RHF and RHI the same? They must believe so. Well, if they are the same, I think they should stop acting as two separate entities and the costs that it entails  like office space, telephones, and administrative staff. It's starting to sound weird to me.

I'm starting to feel that two groups that can't answer questions about spending on regeneration or a cure for chronic spinal cord injury are somehow hiding something from the community of the chronically injured.

As always, I hope I'm wrong and that they're not answering because they are too arrogant and feel that they don't owe US, the paralyzed, an answer, not because they're not spending on chronic cure.

I guess this means a new campaign. Stay tuned.

By the way, just in case you don't know who I am, I am Dennis Tesolat. I take responsibility for what I write.

Working2Walk - I'll be there in spirit AND pocketbook

I've never done this on my blog before, but today I'm happy to make a very important announcement.

I made a small donation of USD125 to Unite2FightParalysis (U2FP) today. 

Let me tell you why I did and why I think you should, too.

The amount of my donation is equal to the early bird registration for the Working2Walk(W2W) conference that they are holding in Irvine, California on 1-3 November. For those of you who don't know what Working2Walk is, let me tell you just a little.

• a yearly conference sponsored by U2FP since 2006 to bring together scientists, practioners, paralysis survivors and family members for a dynamic exchange of information and strategies
• with a jam packed agenda of the best science to cure paralysis
• presented by leading world scientists and others involved in raising money and advocating for a cure for spinal cord injury

I wish I could attend W2W, organized by U2FP, but because of distance and pain I really can't go to California, but distance or pain shouldn't deter us from participating even if we can't physically attend.

Last year I was skyped in from Osaka to Washington to sit on the advocacy panel. It was a great experience to be able to talk about activism in the spinal cord injury with so many at the conference and even more people not at the conference.

That's right; more people saw me who weren't at the conference than were actually at the conference. This is because the W2W organizers make sure that we benefit by:

• having a live blogto read about the events as they happen (2011 W2W)
• putting the main speakers up on the web so we can see the good news about the main scientific cure breakthroughs (2010&2011 W2W)

Not only this, but we benefit from the advocacy that they undertake on our behalf year round.

• legislative advocacy on behalf of the spinal cord injury community
• teaching us how to be active for cure through their advocacy and fundraising toolkits
• identifying and advancing the most promising research to cure CHRONIC spinal cord injury through their Scientific Advisory Board and Advocate Research Committee.
• and giving us the tools to educate, organize, and take action for a cure for spinal cord injury.

So this year, I'm giving something back even though I can't physically attend. I'm going to pay my registration fee by making a donation to say thank you and to continue supporting W2W and U2FP. I hope those who are able do the same, and please don't let the size of my pocketbook discourage you from donating even more.

Roman Reed vetoed but we are not defeated

It was a law that WE supported. That WE backed by sending emails and faxes.

In the end, despite all our efforts, the governor of California, Mr. Jerry Brown, vetoed the law. But he didn't simply veto a law, he let down the paralyzed. He didn't just let us down in words, he let us down by taking away about $3 million dollars from the cure paralysis war chest.

There is a lot of discussion about why he did it, and since I'm no expert on California politics, the source I trust for this information is Mr. Don Reed, whose son Roman Reed the bill is named after. In Mr. Reed's latest post on StemCell Battes (www.stemcellbattles.com) he has this to say in regards to Governor Jerry Brown's reasons.

"Why did Jerry Brown do it? He stood by his beliefs.  He does not approve of fee-based government, believing programs should be paid for by the General Fund, not traffic tickets, already so expensive a poor person may not be able to pay them at all.

I understand that position, and agree with it. 

But our program was funded by the General Fund, for $1.5 million a year.

Then, two years ago, due to the economy, our funding was removed.  

We either had to find a new way to pay for the program, or watch it die."

Mr. Reed is clear about the reasons why funding does not come from the general fund as it should and does not blame Governor Brown.

"Important: I do not hold a grudge against Jerry Brown. He has an impossible task to perform. There is not enough money in the General Fund. That is not his fault, and it is the reason our program's original funding was removed.

Here is the problem.

Republicans have gamed the system. It has become virtually impossible to raise taxes on the rich. In California, Proposition 13, (a citizen's initiative funded by anti-tax groups), made it illegal to raise taxes without a 2/3 majority. Since virtually all Republicans sign a no-new-taxes pledge, the needed 2/3 majority is virtually impossible to achieve. This must change.

I strongly support Governor Brown's tax increase on upper-income Californians. If programs like ours, or school budget increases, or anything at all progressive to have a chance, taxes on the wealthy must go up."

I am actually of the same opinion. We shouldn't have to rely on add ons to fund research that changes the lives of people, but the Reeds knew that without the $1 add on, research funding for a paralysis cure would suffer, and we the paralyzed and our family and friends will also continue suffering.

So, do we give up? The Reeds aren't and are ready to go back at it starting in January. I say that we all continue to back them. After having gone through a half year of this, we're smarter and more ready than ever to take on part III of this battle.

I urge you to sign up as a Cure Captain to make sure we're all spreading the word. Not only in our Roman Reed campaign, but with all the other campaigns we are involved in for paralysis cure.

If you have a moment, a fax to the Governor expressing a polite sorrow that the bill was killed, would really be helpful.

Here is the name & fax number.
Name:  Governor Jerry Brown
Fax:  (916) 558-3160

Here is what I'm writing. Please feel free to cut and paste.

Dear Governor Jerry Brown,

I must admit that I was quite shocked after hearing that you vetoed the Roman Reed law. I can understand your opposition to fee based funding, but for the paralyzed this is the only way to fund research at the moment. 

I hope that in the future we can work together to find better ways to fund paralysis cure research.

Sincerely,

Dennis Tesolat
Osaka, Japan

Here is how you can send a FREE ONLINE FAX in four minutes.

YOU WILL THEN RECEIVE AN EMAIL ASKING YOU TO CLICK TO CONFIRM THAT YOU ARE THE SENDER. FINISHED!

FREE ONLINE FAX to Governor Jerry Brown

This campaign has now ended. See update soon!

All our hard work in sending emails has gotten the Roman Reed law through both the California Assembly and Senate.

Now Governor Jerry Brown has until 30 September to sign it into law or veto it. Let's make sure he knows how important this law to cure paralysis is by sending him a one sentence, FREE ONLINE FAX.

A cure for paralysis is possible. Let's keep making it happen!

Here is the message to copy and paste:
Name:
Country:
Dear Governor Brown: Please sign Assembly Bill 1657 (D-Wieckowski) which would add a dollar to traffic tickets, money to go to California’s spinal cord injury research fund.

Here is the name & fax number.
Name:  Governor Jerry Brown
Fax:  (916) 558-3160

Here is how you can send a FREE ONLINE FAX in four minutes at www.gotfreefax.com  

This campaign has now ended. See update soon!

To Rick Hansen Institute: we don't need paper heroes

After reading two very disheartening announcements from the Rick Hansen Institute (Translational Research Advisory Committee - TRAC, and the 2011/12 Rick Hansen Institute annual report), the biggest beneficiary of the Rick Hansen Foundation, I decided to write a letter to their CEO, Mr. Bill Barrable.

The point of the letter is, very basically, spend and research on chronic spinal cord injury or get out of the game and stop raising false hope in the community.

Simply put, a cure chronic spinal cord injury is not about slogans like "a world without paralysis after spinal cord injury", but about spending on the right research. If RHI is not interested in spending on curing chronic spinal cord injury; they should just be clear with the community.

The letter below was sent today via email and fax and I will let you all know their response. I know that you're all itching to make your voices heard, but for now, let's see their response. As always, I hope they prove me wrong. Cure is not about my ego and I would love to admit that I'm wrong if money is going to cure chronic SCI. I hope others, without naming names, can also leave ego out of it. 

We want cure, not paper heroes.
________________________________________

Dennis Tesolat

Japan, Osaka-shi,

stemcells.and.atombombs@gmail.com

8 September 2012

Via FAX & Email

Bill Barrable, CEO

Rick Hansen Institute

6400 - 818 West 10th Avenue,
Blusson Spinal Cord Centre,

Vancouver, British Columbia,

Canada

FAX: +1-604-707-2121

Email: bbarrable@rickhanseninstitute.org

Dear Mr. Barrable,

My name is Dennis Tesolat and I have been involved with community questions directed to the Rick Hansen Foundation in regards to their spending on a biological cure for chronic spinal cord injury.

With great expectations I read about your new TRAC committee and its members along with the RHI 2011-2012 annual report.  I firmly believe that the TRAC committee could have a very good impact on decisions made by the RHI board.  I had two serious concerns after reading through these reports.  My first is that in looking at the members of this committee, I don’t see anyone who has been involved  in research into such a cure except for Drs. Fehlings and Kwon.

My other concern is with your annual report.  From my reading of this, it would appear that your efforts are concerned exclusively with preventing paralysis as an outcome of spinal cord injury, while at the same time trying to improve quality of life for those of us already paralyzed.

In my opinion, this is unacceptable from an organization whose slogan is “a world without paralysis after spinal cord injury”.  Please tell me that I am wrong. Please tell me that I missed very important things in your report and that you are contributing to specific efforts towards an actual physical cure for chronic spinal cord injury.

If you cannot point these efforts out to me, I would suggest that RHI be very clear with the community and tell people that your goal is NOT a physical cure for chronic spinal cord injury.

Without this announcement, countless people currently living with paralysis will make donations in the belief that you are working on an actual cure for them. There will be continued resentment and anger from the community when they find out they have been misled again.

I also believe that Members of Parliament and Legislative Assemblies who vote funds for your organization do so under the impression that RHI is seeking a cure for both acute and chronic paralysis. If your organization is not actively supporting efforts towards regeneration, you also need to be clear on this with your major funding sources.

More insidiously, organizations around the world which see you as a leader in the field may believe that you are offering leadership towards a cure for chronic spinal cord injuries.  If you do not offer this, there will be very deleterious effects on the overall field.  We therefore suggest that you actively step away from campaigning in this area and offering leadership unless you're willing to actually fund the scientific research that will lead to regeneration.

Your silence around this issue is damagingto both the community and other spinal cord injury associations. I hope that, unlike RHF, you will break the silencearound this issue and answer clearly and honestly.

Sincerely,

Dennis Tesolat

StemCells&AtomBombs

www.StemCellsandAtomBombs.blogspot.com

U2FP new knockout website launched to cure paralysis

When I was first paralyzed I was lucky because within a week my union set me up with a computer in the hospital. They told me that I could work when I was up to it. This really saved my life as I realized that regardless of my paralysis, I was still needed; my work still had to get done.

But that computer also brought me something else - HOPE for a paralysis cure as I could read all the latest information about research. This was great, but it wasn't until I stumbled across the U2FP website that real hope came my way.

For those of you who don't know, U2FP stands for Unite2FightParalysis and the idea that a person who couldn't even roll over in bed could FIGHT paralysis truly impressed me. Hospital beds are lonely places, especially when most are giving you the 'life in the chair' speech, but reading through the U2FP site let me know that I could do something about paralysis other than sit patiently in my chair and hope for cure.

Because I owe this group a deep gratitude, I want to let you all know about their new website.

Want to educate yourself about cure? It's all here.

Want to connect with cure community. It's all here.

Want to know how you can fight paralysis? It's all here.

And plenty, plenty more.

For me, U2FP is the embodiment of the three principles of the kind of organization we need to beat paralysis - educate, organize, and agitate.

I hope you take some time not only to read about U2FP, but to also take part in their activities to cure spinal cord injury.

On my end, I'll say thank you to U2FP for all the great work they've done in the past and for their future plans to fight the good fight over paralysis cure.

LA Times fails the paralyzed

With their blaring editorial, "No traffic fines for research", the LA Times has shown that it is an enemy of the paralyzed by both arguing against the need for a $1 surcharge on moving vehicle violations to support paralysis cure research AND by offering no other alternative to funding a cure. Remember folks, this is not an article, this is an editorial which gives the LA Times' opinion. 

I can respect the fact that they are entitled to their opinion; we all are. But what I can't understand is the irresponsibility of their editorial. 

A responsible newspaper would have offered alternatives to funding paralysis research on a state by state basis.

A responsible newspaper would have also talked about the costs associated to not curing paralysis.

A responsible newspaper would have talked about the money that has come in to California because California WAS financially supporting a cure for paralysis.

But these are not the words of responsible journalism. They are the words of a newspaper who on one hand empathizes with the need for a cure, but then condemns the fact that money is being spent on it AND more importantly offers no alternative. This is exactly why I use the word enemy of paralysis cure.

Oddly enough, I don't disagree that this is not the best way to fund medical research. The best way would be for a national or even international fund and leadership to cure paralysis. This way we would get the most bang for our buck and be able to use the best scientists wherever they live or do their research. I've said it before and I'll say it again; a Manhattan or Apollo project like scheme would soon see a cure for paralysis.

The problem is that this is not something on the horizon at the moment so we are stuck looking for alternatives and that means looking for money at a much more local level.

How I wish this editorial would have talked about a national strategy to cure paralysis rather than bemoaning the fact that Californians who break traffic laws will be asked for a dollar. An important paper like the LA Times could have an impact on a national strategy, but instead decided that Californians are not their brothers' keepers.

Here is a letter to the editor submitted by one of our Cure Captains in the Liberation War to Cure Paralysis.

We are not asking Californians to foot this bill alone, just to help the other states that already are doing it. My home state of New York is as are several others. The Spinal Cord Injury community is small in comparison to say breast cancer. Funds are desperately needed, how many of your tax dollars are already being spent on making building accessible, or going to long term health care coverage for the folks that are injured? Would you be as quick to say no if it was one of your loved ones? Do me a favor please visit Project Walk in Carlsbad, talk to those people about the daily hell they live in. Not one person in a chair wants to be in it. I have a 21 year old son that was injured and has no function from the chest down, he can no longer use his hands, go the toilet by himself. He was going to graduate last May and go onto graduate school. That is now a memory unless a cure is found. 12,000 Americans suffer this injury every year, the next one could be someone you know or love or even be you. Californians, please support this law.