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