More reasons to support Working2Walk and Unite2Fight Paralysis

Irvine, California  1-3 November

Today I'm doing a follow up from my last post about the Working2Walk (W2W) conference being held in Irvine, California on 1-3 November. In my last post, "Working2Walk - I'll be there in spirit an pocketbook" I talked about some of the reasons why we should support this conference even if we can't attend and how I made a small donation to Unite2Fight Paralysis (U2FP), the conference's main sponsor.

• 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
• having a live blog to 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). These videos have been seen in over 50 countries.

And the things that U2FP does for the spinal cord injury community outside of the W2W conference.

• 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.

These are the the first hand benefits that we all get from this conference and this organization, and why I made a donation to support their work.

But there is a more personal side because U2FP's work IS personal. 

U2Fp understands firsthand the challenges and issues that accompany an SCI. They aren't driven to our work by a paycheque. They are driven by the love they have for the people who are injured. Everyone on the U2FP board either has a SCI or a child with one. They're passionate about moving therapies forward and witnessing recovery in our lifetimes. 

The researchers they work with, recognize this and partner with them to better understand the science and work with us to advance it.  The scientists and researchers understand the value of this partnership and commit year after year to participating at W2W. U2FP needs more people to support their work, so that they can develop additional strategies to support the researchers work and move us all closer to recovery. 

So, even if you can't attend, you do get a benefit and I hope that you can join me in supporting U2FP's wonderful work.

Do I smell or something?

I'm starting to get the distinct feeling that the people at Rick Hansen Foundation and Institute don't want to answer questions from the public. Not even questions from their own constituents.

I asked,
1. What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

2. What research was done in regards to question one above?

3. What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

And they answered.
////////////
Hi Dennis,

Thanks for writingus again with your questions.

We share your passion in accelerating progress towards a cure for paralysis after spinal cord injury, although we may not always agree on the meansto get there.

We're a young organization (created in 2007) now enteringour next five-yearwork phase.
We're currently wrapping up many of our olderprojects and about to embark on some exciting new initiatives in our three core areas: cure, care and collaboration.

In the meantime, our FAQ page (http://www.rickhanseninstitute.org/what-we-do/faqs#percentage )providesa breakdown of projects by core area,ourwork in the cure sphere, someprogress, funding sourcesand where we're heading.

Regards,
The Rick Hansen Institute
Rick Hansen Institute
6th Floor, Blusson Spinal Cord Centre
6400 - 818 W. 10th Avenue, Vancouver, BC V5Z 1M9
t: 604-707-2100
e: info@rickhanseninstitute.org
www.rickhanseninstitute.org

A world without paralysis after spinal cord injury.

Follow us:
facebook.com/RickHansenInstitute
twitter.com/rhinstitute
/////////////////

Follow the whole conversation between me and the Rick Hansen Institute

1. To Rick Hansen Institute: we don't need paper heroes - http://stemcellsandatombombs.blogspot.com/2012/09/to-rick-hansen-institute-we-dont-need.html?m=1

2. Pants on firs - http://stemcellsandatombombs.blogspot.com/2012/10/lxxx-lxxx-pants-on-fire.html?m=1

3. Copy and paste the answers. Thanks. - http://stemcellsandatombombs.blogspot.com/2012/10/copy-and-paste-answers-thanks.html?m=1
Dennis Tesolat
www.StemCellsandAtomBombs.blogspot.com
BlackBerry from DOCOMO

Vote for your favourite image

	Ask most people that I work with and they will tell you that I love my work to be constructively criticized. It's what makes the end product better. There was some criticism of the image I chose of the woman dancer (image 2). Some believed that she looked like a stripper and maybe that it wasn't the most positive image that I could have chosen. I truly believed the woman to be a dancer and didn't even consider the fact of what others might have thought. A friend of mine told me that it couldn't be a stripper because strippers dance in heels and my image was clearly a dancer, but I guess we all have different eyes and I truly do appreciate the comments. So, what I'm going to do, because I believe that most people have good sense, and the last thing I want to do is divide us over an image, I will let those who follow my blog, my facebook friends, your facebook friends, anybody, vote to decide what the best image is. I think people can chose an image that won't insult most people.  It's up to YOU to chose. I've picked five that I like, at least that were free and not stolen, and I'll leave it to you. You can vote in one click below to pick the image that I will use for our current Rick Hansen Lobbying campaign. For more information about the campaign, please see here.
IMAGE 1
IMAGE 2
IMAGE 3 IMAGE 4

IMAGE 5

The vote is over and image 3 wins the race. Thanks to all of you who voted.

Rick Hansen Foundation lobbying

This below letter was sent by fax and email after reading information about the Rick Hansen Foundation's (RHF) plans to start lobbying to secure government funding for the next five years.

Our goal is to make sure that there is a commitment by RHF to fund basic and translational research for a cure for chronic spinal cord injury. 

The signatories to this letter all want RHF to be successful in their bid to secure funding, but refuse to idly sit by and allow words and phrases like 'cure' and 'a world without paralysis after spinal cord injury' be used to raise funds if there is no effort to fund research for a cure for chronic spinal cord injury, or at least a statement from RHF saying that they do not support research for a cure for chronic spinal cord injury.

We who are currently living with spinal cord injury and our supporters will not be left behind and told to shut up, sit down, clap our hands, and pass the donation bucket.

/////////////////////////////////////////////////////////////////////////////////////////////////////

Copy and paste the answers. Thanks!

Dennis Tesolat
Japan, Osaka-shi,
stemcells.and.atombombs@gmail.com

5 October 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. Bill Barrable,

Thank you for your reply.

I'm sorry if I have missed any answers that RHI or RHF have sent me in the past.
Actually, this is the first time that I have written to RHI and the only other time that RHI 'signed' an email was the very first time. After that, each email was sent from Mr. Art Reitmayer, the past CEO of RHF.

Therefore, if you've already answered in the past, please forgive. This means that you should have the answer at the ready since you have already answered.

So here we go.
1. What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

2. What research was done in regards to question one above?

3. What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

Thank you for your patience in answering my questions. I've tried to find the answers that you spoke of, but failed. If you could just copy and paste the information, it would be well appreciated.

Sincerely,
Dennis Tesolat
www.StemCellsandAtomBombs.blogspot.jp



Dennis Tesolat
www.StemCellsandAtomBombs.blogspot.com
BlackBerry from DOCOMO

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.