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!

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.

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

a. Question: We sent email to RHF asking this, " I would like to ask you to provide me with the percentage of funds being spent by RHF on CNS regeneration and a cure for SCI." 

b. Answer: Within a few days we got our answer. "Leveraging a global network of like-minded individuals and organizations, RHI is doing everything possible within their means to help create a world without paralysis after spinal cord injury."

2. Second question to RHF on 31 July 2011

a. Question: "There was no answer to the question regarding what percentage of funds raised by Rick Hansen Foundation is being spent on a cure for spinal cord injury.  I await an answer to this question."

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?"

b. Our request for talks was completely ignored in the answer and none of the questions were answered. The answer said, "The work of the Rick Hansen Foundation supports the same vision Rick expressed when he set out on his Man In Motion World Tour – to raise awareness of the potential of people with disabilities by creating accessible and inclusive communities, and supporting research for a cure."  (scroll down to "Answer 3" to see the full answer)

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.

ii. Mr. Reitmayer then followed up with a written answer stating that, "the Foundation's mission and vision - which is to raise awareness of the potential of people with disabilities by creating accessible and inclusive communities, and supporting research for a cure."

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.

RISE UP to support the Roman Reed act for paralysis cure

320 people worldwide have already sent their email to the Transportation and Housing Committee of the California Senate. The vote is this Tuesday, 26 June at 1:30PM (California time). Now is the time to RISE UP and send your email, too.


Just a little background to refresh your memory about this very important piece of legislation to support a cure for paralysis. 


The goal of the the Roman Reed Spinal Cord Injury Research Act is to provide annual funding for research of spinal cord injury and related neurological conditions such as ALS, Alzheimer's,Parkinsons', Spinal Muscular Atrophy (SMA) and others, to be able to one day realize the dream of paralysis cure.  The funding comes from adding one dollar to moving violating traffic offences as there is a clear nexus of connection between car crash and paralysis. Auto accidents cause 46%of all spinal cord injuries and 56% of children's SCI paralysis,  according to the Mayo Clinic. It is altogether appropriate to fine those who may cause the condition.


Please RISE UP and support this important act so one day EVERYONE can!


This campaign has now ended, thank you for your support!

Support Roman Reed paralysis act in California Senate

The vote is on Tuesday, 26 June at 13:30 (California Time), so we need you to send this email NOW!

First of all, thanks to everyone who has supported this act through the California Assembly and two very important committee hearings. We've gone this far, too far to give up now that we've made it all the way to the California Senate's Housing and Transportation Committee. We've also not made it far enough for you to sit back and take it for granted that we've won. We still have a long way to go.


Just a little background to refresh your memory about this very important piece of legislation to support a cure for paralysis. 


The goal of the the Roman Reed Spinal Cord Injury Research Act is to provide annual funding for research of spinal cord injury and related neurological conditions such as ALS, Alzheimer's,Parkinsons', Spinal Muscular Atrophy (SMA) and others, to be able to one day realize the dream of paralysis cure.  The funding comes from adding one dollar to moving violating traffic offences as there is a clear nexus of connection between car crash and paralysis. Auto accidents cause 46%of all spinal cord injuries and 56% of children's SCI paralysis,  according to the Mayo Clinic. It is altogether appropriate to fine those who may cause the condition.


Take ONE SECOND and send your email to support this important law.
This campaign has now ended, thank you for your support!

Dreaming of Hillary Clinton

Hillary Rodham Clinton

Who in the hell is Dennis Tesolat? That's what I think that Rick Hansen thinks every time I send him emails and faxes.


Now don't get me wrong, I think that we all have to keep sending our questions, petitions, and appeals, but wouldn't it be nice if we had a big name behind us.


Whenever I've had this conversation with others, or even myself, celebrities, paralyzed or not, always come up. I think that it would be great to have Bruce Springsteen or even the 'Queen of Soul' Aretha Franklin as the public face of a cure for paralysis, but I think we need someone who demands respect and knows how to make herself heard.


Tonight while I was reading an article in the paper about Hillary Clinton, it struck me that she was the one I've been looking for.


Luckily, the paper went on to say that she's leaving her gig at the Department of State and not considering a run for the White House in 2016.


With this in mind, I penned (thumbed) her a quick letter (yup, I'm sending it in the actual post).


I'll let you know if and when I hear back;)
****************
The Honorable Hillary Clinton Secretary of State
U.S. Department of State
2201 C Street NW
Washington, DC
20520
13 June 2012

Dear Mrs. Hillary Rodham Clinton,


My name is Dennis Tesolat. I am a Canadian living in Osaka, Japan, and I am a paraplegic.
Since I know that you're busy, I won't waste your time boring you with the details of my life and get right to the point of this letter.


The reason I'm writing is because I work with activists all over the world who are dealing with a cure for spinal cord injury, and I'd like to get you on our team.


I was reading in the paper that you're wrapping up your current job this year and it doesn't sound like you'll be making a run for the White House in 2016. The paper said something about joining your husband at the Clinton Foundation where you can continue your advocacy work for women's and human rights. These are two great areas of advocacy, and I think that you really have your work cut out for you, but why not add one more thing to that; become our international czar for a cure for paralysis. I imagine that with someone like you at the helm it will only take a few years and then you can go back to the other things that you are interested in.


I know you're probably thinking that I'm nuts to say only a few years, but that's how close I reckon we are especially if someone like you gets on board.


You're probably wondering what kind of work you'd be doing for us. Well, I don't like to micromanage and I think that you'll develop the role, but if I were to give you some examples, I would say:


Raising money; it's always needed.
Talking to the folks at the NIH about funding applications.
Speeding up the process for clinical trials by meeting with the FDA when applications are made.


But I think most importantly, your name and your skills would get researchers, universities, biotechs, and even governments collaborating more and therefore speeding this stuff up. I think most scientists would be impressed if you personally called them up and invited them all over for coffee and then you could make them work more closely together.


I even think that you could scare people from time to time to make them do the right thing. I'll give you a quick example. Without going into details, there is this one company in that holds a patent on a product that scientists say could be very important in curing paralysis. The problem is that they're sitting on it. This is after a lot of money in direct government grants to them and grants to scientists to study it. This would be a good first project.


I can imagine their faces as you swagger on into their office and bang their heads together while demanding that they meet their obligation to society instead of putting their shareholders ahead of the paralyzed.


Heck, even if you just agreed to do this it would be a tremendous help.

I'll fill you in on the details when you call me. I'm on skype (stemcellsandatombombs) and if that's not convenient, send me an email (stemcells.and.atombombs(at mark)gmail.com) with your number and I'll give you a call.


Hope we can work together.


Sincerely,
Dennis Tesolat

PS. Yes, this offer is serious. I just figured that you get a lot of mail and if I just made my request like everyone else's, you'd probably chuck it in the trash. I hope that by making you laugh, you'll look at this offer with interest.

Rick Hansen Foundation responds again

I was quite surprised to find this email (image on the right) from Mr. Art Reitmayer, Rick Hansen Foundation (RHF) CEO, in response to our appeal. 


I must admit that I was again dismayed by the fact that it had so little information and in fact even raised more questions, but happy that they know we can't just be ignored.


So, I have responded to Mr. Reitmayer and have asked him for more information, especially in regards to concrete details from their annual report which RHF keeps telling us has all the answers. It doesn't. You can download a copy of the report questions here.


Here is my response to Mr. Reitmayer. You can download the PDF of the questions regarding the financial report here.
************************
2 June 2012



Dear Mr. Reitmayer,


Thank you for your response to our questions. I appreciate you taking the time to write even if Mr. Hansen didn’t. I can understand that he is a busy man, but when 737 people living with paralysis and their supporters write to him specifically asking a question, you’d figure he’d make the time.


So as there is no confusion, the questions we are asking this time are as follows:


How much are you planning to spend in the next five years to find a cure for chronic spinal cord injury?


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


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? 


While I understand that the level of funding will depend on your own fundraising over the next five years making it difficult to give us exact numbers, it is inconceivable that there are no plans past year to year work. If you cannot tell us exactly how much will be spent, we would like to know what research projects (basic and clinical research) you have plans to fund to cure chronic spinal cord injury. Even if the next five years is impossible to predict, please give us the figures for the past fiscal year that ended on 31 March, and for the current fiscal year which started on 1 April 2012?


Also, you can see that question three has not been answered at all, and since people asked, I’m sure they would appreciate an answer.


I do know that you cannot spend your resources “willy nilly” and of course spending decisions are based on the assessments from doctors, clinicians, and researchers, but we do wonder where the voice of the spinal injured community comes it to it? It would be sad to think that our only role is to raise money and donate.


The following line from your letter was of particular concern. “Including prevention, advanced treatments and early intervention, which have a higher probability of contributing to renewed mobility, and at times, full recovery - is fundamental to securing the requisite funding.” It sounds like there are no current plans to deal with chronic spinal cord injury. While I’m sure government funding comes with many prerequisites, do private donations also have prerequisites? Also, does your government funding preclude cure for chronic spinal cord injury? As you may imagine, a lot of your private individual donations come from those living with chronic spinal cord injury, and I’m sure that many of these people do donate based on their hope that RHF works towards a cure for chronic spinal cord injury.


In regards to your annual report, I can assure you that I have read it many times and if the answers to the questions we are asking were in this report, I would have no need to ask further. The problem is that the report is vague and has no price tag for individual initiatives or donations, but since you have insisted that I read this, I have again, and I have prepared a very detailed list of questions that are missing from the report. Please see the attached question letter in regards to our very specific questions about funding for a cure for chronic spinal cord injury.


Regardless what you may think, our goal is not to discredit RHF's work, but to understand how RHF is treating a cure for chronic spinal cord injury in terms of its whole organizational plan. If this is not a priority, let the world know and we will send our donations to those organizations that support our goals for a cure. Please do not hide behind the slogan, 'a world without paralysis after spinal cord injury,' as it may lead to misunderstanding. Be clear with us about if this includes chronic spinal cord injury.


You can also rest assured that we do support your other efforts, but since the signees asked specifically about plans for cure for chronic spinal cord injury, I have stayed solely on this topic.

Once again, I thank you for your consideration in responding to our questions, but there is a feeling that Mr. Hansen’s answers at the Interdependence conference and your letter do not give us a full picture of RHF’s commitment to a cure for chronic spinal cord injury.


I look forward to your response and hope to hear that you are with us not only in spirit but in terms of financing and prioritizing cure. We are waiting all over the world to hear your clear responses.


Sincerely,


Dennis Tesolat