25 July 2012

Roman Reed law - Senate Appropriations Committee

We need your CLICK for CURE again! The next vote is 3 August.  

A few more steps to climb till we succeed
Will you stand up and be counted for AB 1657 (Roman Reed Law) or will you sit idly by as paralysis and suffering happens? 
We weren't born to be paralyzed. We were born to make a difference.
~Roman Reed~

You CAN stand up and be counted by sending a very simple email with one click to the members of the California Senate Appropriation Committee at the bottom of the page.

Your emails have already got us through three committees and the full Assembly. We have this committee, then the full Senate, and finally the Governor's signature. 

We've made great progress, but it's still too early to claim victory. 

Just a quick reminder of what AB1657 (Roman Reed Law) is.

AB 1657 provides annual funding for research of spinal cord injury and related neurological conditions such as ALS, Alzheimer's, Parkinsons', Spinal Muscular Atrophy (SMA) and others by tacking on a one dollar ($1) surcharge on all moving traffic violations.

There is a clear nexus of connection between car crashes and paralysis. According to the Mayo Clinic, auto accidents cause 46% of all spinal cord injuries and 56% of children's SCI paralysis. It is altogether appropriate to fine those who may cause the condition. 

This way we'll be able to one day realize the dream of paralysis cure.

Supported by Lt.Governor Gavin Newsom, the University ofCalifornia, the California Institute for Regenerative Medicine, Bob Klein, Steve Westly, Craig Newmark, Kristi Yamaguchi, Stem Cells Inc., CA Stem Cell Inc., Dr. Hans Keirstead, California Healthcare Institute, Christopher & Dana Reeve Foundation, Dr. Irv Weissman, Sherry Lansing,Dr. Paul Berg, Art Torres, Duane Roth, Stu Gordon, Dr. Shinya Yamanaka, Dr. Os Steward, Dr. Brock Reeve, Dr. Wise Young, Dr. Paul Knoepfler, Bay Bio and the USC School of Politics among many others! 

This campaign is now closed. Thank you all for your support.

21 July 2012

Art's last letter

The title sounds almost poetic, doesn't it? But poetry is not the point of today's blog, but rather a very surprising happening.

Out of the blue, Mr. Art Reitmayer, has become the EX CEO of the Rick Hansen Foundation after less than one year (I imagine that the two weeks short of one year is probably the time off he was supposed to have).

What happened? Was one year the original plan? Why has no announcement been made? The RHF website is now missing a CEO on their executive team, and they are currently hunting for a new CEO. Sounds sudden to me.

Mr. Reitmayer was the only one sending us answers (or non-answers as I like to call them) to our questions. Even when the questions were sent to Mr. Hansen personally, the only person that responded was the ex CEO, which I must admit makes me a little worried about future answers.

But he did send me one more email before he left. It wasn't a 'dear Dennis' letter telling me how much he'd miss me and all our questions. He didn't write to wish me a hearty sayonara. Heck, he didn't even tell me he was leaving. He did send us some more pieces to our puzzle about their spending.

RHF makes a lot of grants to external organizations and there is no public information on who gets how much, just a list of the different organizations and a total of the donations to all the different groups. So, Mr. Reitmayer was able to provide this to us. Of course he didn't answer our big question about spending on CHRONIC SPINAL CORD INJURY, but his last answer did give us a few more pieces. 

The biggest amount goes to the Rick Hansen Institute, but without them telling us what RHI is spending on, we have now way of knowing if chronic spinal cord injury is part of the spending. I'm starting to feel that they're not spending on chronic spinal cord injury or of course that they'd tell us and look like super stars.

Anyhow, you be the judge of their spending on a cure for paralysis. The chart is below and an updated version of my complete Q&A based on their 2010 annual report can be found here

Happy hunting and I promise that we are not done!

12 July 2012

Toilets push cure to the wayside

An odd title, I know, but it's how I frame the war on paralysis.

Here's a picture of the toilet at the train station near to my office. Notice how the handrails on the left are so far away from the toilet? Notice how high the handrail is on the right? Well, maybe you don't know this, but I don't think that this toilet is built for someone who is a paraplegic. Getting on the toilet would be easy, but with the handrails so far apart, I don't thing that I'd be able to take off and put my pants back. Even though it's not a pretty site, I bet you've never thought about how someone like me can take my pants off and pull them back up if I can't stand up. Anyway, that talk is a whole separate blog.

Now, before my regular readers wonder why I've moved off cure to talk about toilets, I'll tell you why.

While I was first in hospital, I swore that I would stamp out problems like this. My friends used to joke that I'd be at the local ward office everyday with pictures of busted up road or ramp cuts that were no good for wheelchairs and threatening to withhold my little bit of tax for inaccessible areas.

So do you know what I did about this toilet and it's poor accessibility? Nothing.

So now you think I've become discouraged, right?

Well, no. I just decided to use my fight for something much more important; a cure for spinal cord injury.

See, before I left the hospital I had already started this blog and little by little met other activists and decided that my energy should be spent on cure.

So, are inaccessible toilets and roads unimportant? No, but there are a lot of other organizations and groups fighting for this; my job is to battle for cure.

Why not do both you ask?

Because whenever I see organizations who try to improve the quality of life AND cure, they inadvertently end up on quality of life as the main or only part. Just look at the Rick Hansen Foundation.

It's easy to fall into the 'quality of life trap' as I call it.

Why? Because the results are instantaneous. It looks like you've accomplished something right away. Immediately you receive praise for your hard work and immediately improve the quality of life for many people.

I'm not saying that improving quality of life is unimportant, I'm just saying that when you try to do both, cure falls by the wayside.

Just my opinion, but it's the reason why I left the toilet problem alone. I know that after I get one toilet fixed I'll start carrying around a camera to take pictures of broken concrete and asphalt. And where will that leave my cure work? By the wayside along with every other organization that tries to do both.

01 July 2012

Maybe I'm as dumb as a rock...but I don't think so.

Is Dennis Tesolat as dumb as a rock?
During our ongoing correspondence with the Rick Hansen Foundation in regards to their spending on a cure for chronic spinal cord injury, I'm starting to think that maybe I'm the one who is thick. Maybe they have answered all our questions and I'm just too stupid to understand. 

So today I'll ask your opinion and if it comes out that people think I'm the dense one, then maybe I'll have to stop doing all of this. You judge!

Here is the history of why I'm starting to think that I'm obtuse.

1. First question to RHF on 27 July 2011

2. Second question to RHF on 31 July 2011

b. Answer: Another answer NOT answering the question, or does it? Maybe my peanut sized brain can't fully comprehend the email. You decide. "Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives, through the support of charitable programs and research grants."

3. We asked RHF to hold direct talks on 12 August 2011
a. A letter was sent by five people living with spinal cord injuries from across the world. One in Canada, one in Spain, one in Japan, and two in Italy. We asked for a meeting by skype to answer four questions, one of which was, "How the 81 percent figure you stated in your previous email is divided between quality of life and regenerative research?"

4. Question sent to the patron of the Rick Hansen Relay, the Governor General of Canada, starting on 24 August 2011.
a. Again people from all around the world sent of an email to his Governor Generalism. We asked, "I ask you as the Governor General of Canada and patron of the Rick Hansen Relay to relay my desire for real dialogue with RHF in regards to the urgency of a cure for paralysis and how we in Canada and the international community can better cooperate to achieve Rick Hansens's dream."

b. Worse than the answers we got from RHF, the Governor General ignored people from all over the world including Canadians.

5. RHF's Interdependence Conference in Vancouver and our questions.
a. This time in a huge response to our call for email to RHF, 737 people signed our appeal which started on 19 April 2012, and added their names to our questions. The questions about RHF's commitment to cure chronic spinal cord injury were then emailed, and faxed to Rick Hansen and a courageous member of the spinal cord injured community stood up in the conference to ask these questions face to face with Mr. Hansen.

b. The answers that came from both Mr. Reitmayer, CEO of RHF, in writing, and the answers right out of Mr. Hansen's mouth.

i.  At the May 2012 conference, Mr. Hansen, after being asked by a cure activist, Mr. Hansen 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. You can read and HEAR it all here.

There have since been two more email sent by me personally to RHF and one more answer but after writing this much today, I'll wait a few days to write about that.

I don't want to distract you from the main question of trying to decide whether I'm too stupid to see the answers to our questions, or if there hasn't been any answer yet.