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

26 hours left to click for a paralysis cure

This is a massive rush to make sure that the Roman Reed act to cure paralysis (Assembly Bill AB 1657) clears the California Assembly.


YOUR emails have already had this act clear the Public Health Committee.


YOUR emails have already got this through the Appropriations Committee (where the money is decided).


And now we need YOUR EMAIL to get it through the whole of the California Assembly.


Let's make sure that we make a cure for paralysis a reality by making sure we get a majority in the Assembly, and a majority means securing the votes of FIVE more Assembly members to GUARANTEE the passage of this act in the Assembly.


You can do it, but you have to do it now!


Email the following Assembly members to guarantee a majority!


This campaign is now finished and it passed the Assembly. More information to follow. Thanks for all the great support!

Rick Hansen 'answers'?!?

Picture by: Urban Mixer (Raj Taneja)

Thank you to all of you who added your names to our appeal to Rick Hansen and the Rick Hansen Foundation (RHF) about their plans to cure chronic spinal cord injury. A cure for spinal cord injury may well stay beyond our reach until RHF, as one of the largest and most well funded spinal cord injury organizations world wide, gets behind a cure with their massive funding.

As a person living with paralysis or supporting a paralyzed family member or friend, you have the right to ask these questions about cure and receive an answer. You are one of Rick Hansen's constituents.

As a member of the global community you also have a right to ask, and Rick Hansen knows it, too. Twenty five years ago he set off on a world tour because he understood that spinal cord injury and paralysis touches everyone, regardless of where they live.

And as a Canadian, you have an even more unique right to ask and demand answers as RHF's funding comes from your pocket ($117.3 million since 1988 comprising almost 45% of RHF's total funding). When you in Canada ask, Mr. Hansen should be answering with a 'Yes, sir'.

Rick Hansen on the other hand believes that you have neither the right to ask or receive an answer. 

When asked by cure activists, from their wheelchairs, at his recent Interdependence conference; that's right cure campaigners were on hand to make sure your questions were answered, he ducked, feigned, and swayed his way through his non-answer. He was like the Mohammad Ali of non-answers. When he couldn't non-answer anymore, he actually called your questions inappropriate for a public forum.

What's inappropriate about asking an organization which uses the slogan 'a world without paralysis after spinal cord injury' about their plans and spending on a cure for spinal cord injury?

Just so you think that I'm not making this all up, I was fortunate enough to receive a recording of the events from an anonymous conference attendee. He or she recorded the exchange between the cure activist and Mr. Hansen. Video footage may also be added soon.

Asked from the floor during a public Q&A about his plans to cure chronic spinal cord injury and the money he was pledging to it, he came out of his corner with that full Rick Hansen grin and a whistle on his lips. He thought he sounded clever, but anyone around him, especially those who know him personally, probably found it embarrassing as he totally evaded the questions. Listen to the recording.

He 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. 


He actually said that how much he spends on cure all depends on how much he raises.  
Let's face it, RHF has a budget, and while he may have whispered sweet nothings about the distant future, he could have been clear about his spending on a cure for chronic spinal cord injury in the past AND in the near future. 

The person who asked the question described the answer as "disrespectful".

When the cure campaigner met Mr. Hansen on the floor of the convention, she thanked him for his "insulting answer". He snapped back that it was "a totally acceptable answer to a totally inappropriate question." He said that it was not the time or place to ask such a question in a public place and even accused the cure activist of being negative rather than going forward and being constructive.

When reminded by another activist in the room (there's more than one of us) that over 700 people asked this question, Mr. Hansen spoke even more nonsense. He wanted to know how much we have raised and that when we raise our own money, we can decide what to do with it. 

Where does Mr. Hansen thinks his money comes from? Does he think it falls off the spinal cord injury tree? 

Because the money comes from us. Because he asks for donations from anywhere in the world. Because the money is given to him in the name of 'a world without paralysis after spinal cord injury', we have the right to ask and be answered.

With this attitude of disregarding the questions of those he is meant to serve, it is no wonder that we are now hearing whiffs of discontent from those around him. 

Soon they will also say what we've already said; the emperor has no clothes.

So do we leave this alone? 

I say NO.

Let's make sure that your questions are answered in writing like you asked for. Let's make sure that your cure money is accounted for. Let's make sure that the voice of the paralyzed is heard over the roar of the Rick Hansen victory celebrations.

Let's make sure that other organizations understand that this sort of behaviour is unacceptable.

Together my friends. 

We've come this far already. Let's make sure money raised for cure is spent on the cure we want. 

737 sign the Rick Hansen appeal

YOU have made our appeal campaign to the Rick Hansen Foundation the best ever.

Rick Hansen has been sent the questions that you signed your name to and now we will await an answer.

1. How much are you planning to spend in the next five years to find a cure for chronic spinal cord injury?
2. Which research projects (basic and clinical research) will be funded by Rick Hansen organizations to get people with chronic sci out of wheelchairs?
3. 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?


Of course we all know that we've asked, but a press release has also been issued to the Canadian media and all of the main presenters at the Interdependence Conference have also been notified that we are waiting for answers.


I would love them to come back with a large list of all the things that they have done and are planning to do to cure chronic spinal cord injury. The only thing I would say then is thanks and "Why didn't you tell us when we first asked?"


In the meantime, you can also help spread the word by twittering our press release, putting it out on facebook, and even sending it to people that YOU know in the media or think would be interested.  You can find the press release at http://bit.ly/RHFPR. 


Thanks.

CURE for the Osaka Strut. So sign it!

No one knows that I can really strut!

When we win cure, I promise that I'll take you on a tour of Osaka doing the Osaka STRUT!

What you got to do to win a front row seat to the Osaka STRUT is to SIGN!

ONE MORE DAY to sign for CURE for our appeal to:

Rick Hansen to stand on CURE's side. www.bit.ly/RickHansen

To the California Assembly to fund the Roman Reed cure paralysis act. http://www.stemcellsandatombombs.blogspot.jp/2012/04/hit-send-button-below-to-help-cure-for.html

Don't forget the Osaka STRUT!