Second Question to the Rick Hansen Foundation

Thank you for sending your email to the Rick Hansen Foundation.


Unfortunately the response they sent you does not include a figure for the percentage of funds being spent on a cure for spinal cord injury.


Rick Hansen has traveled all over the world talking about spinal cord injury, so therefore you have a right to know the answer to this question.


I know it’s not enough, but at the moment, I urge you to write back with a very simple question to show them that you are not happy with their response.


This campaign has now ended. Please stay tuned for the third part of the campaign.


To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation

Subject: Please respond

Original email: http://bit.ly/pMBjhj

Message: 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. In case you didn’t see the original email, see above.

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Can't get a straight answer from Rick Hansen Foundation!

This week, paralyzed people from around the world sent a real simple request for information to Mr. Art Reitmayer, the CEO of the Rick Hansen Foundation (RHF). “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.” We got an answer to something, but not to our question.
The Question	The Answer
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF) On the 25th anniversary of Rick's heroic journey to cure paralysis I would like to congratulate you on your recent appointment as CEO of the Rick Hansen Foundation. If Rick believed, twenty five years ago, that a cure for paralysis was possible, RHF should feel that a cure is now an inevitability in light of recent scientific progress. As a person concerned about spinal cord injury (SCI) I believe that the appointment of a new CEO at such an important juncture allows RHF to accelerate its work towards a cure. As we all know a cure will not come from hope alone but through hard work, perseverance and the support of science. However, I am concerned that RHF may have lost some focus in the pursuit of a cure for spinal cord injury. My concern stems from information posted on both the Rick Hansen Institute and ICORD (both established and funded by RHF) websites. Looking at this information I do not see central nervous system   (CNS) regeneration as the top priority of either of these two groups. Therefore 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. I realize that care and quality of life work is   important for those living with SCI, but a cure that is showing itself to be within our reach is just as important and is actually the ultimate form of care/quality of life. Thank you for reading this and I hope for an answer to my question in the very near future. Dennis Tesolat	Dear Dennis, Thank you for your inquiry.  We appreciate the opportunity to share further details with you about the nature of our work. The Rick Hansen Foundation (RHF) focuses its efforts on improving the daily lives of people with disabilities by creating more accessible and inclusive communities, and accelerating the search for a cure for spinal cord injury (SCI). As you know, SCI research is highly complex. The continuum of   care – from point of injury, to rehabilitation and recovery – is extensive, and requires both financial and practical support at all stages to ensure people with SCI can continue to live as productive citizens in an inclusive and accessible society. Since 1988, RHF has generated $200M for SCI research and quality of life programs while helping to improve the prognosis for newly injured individuals, by directing funds to major research grants and charitable programs. Among the Foundation’s commitments to a cure for SCI, is the creation of the Rick Hansen Institute <http://www.rickhanseninstitute.org/> (RHI). This independent Institute is a Canada-wide collaboration dedicated to accelerating progress towards a cure and improving the quality of life for people who live with SCI and related-disabilities. RHI invests in and supports the most promising work in SCI translational research and the adoption of best practices, including supporting experts working in the promising field of stem cell research. They are also working towards solutions to improve the day-to-day quality of life for those living with SCI, hence their short term focus on reducing the severity of secondary complications associated with SCI. 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. Given their relative size and reach, and the work of others in basic and primary research around the world, their focus is on efforts to accelerate the translation of discoveries and best practices into improved treatments and quality of life for individuals with SCI. We hope this information clarifies the work of the Rick Hansen Foundation and the Rick Hansen Institute. Together, we form one component within a very large community of organizations around the world, dedicated to improving the quality of life of people with disabilities. Our long-term vision is a cure for paralysis after SCI and our continued dedication to this vision is anchored in the ongoing advances happening in the field of SCI research. We encourage you and others interested to visit our websites at     www.rickhansen.com<http://www.rickhansen.com> and www.rickhanseninstitute.org<http://www.rickhanseninstitute.org> to learn more about how we are working towards our common goals. Regards, The Rick Hansen Foundation and The Rick Hansen Institute

Please send a question to Rick Hansen Foundations new CEO

Lately there has been a lot of debate going on in the spinal cord injured community about the commitment to a cure for spinal cord injury (SCI) of one of the biggest and most well funded global organizations dealing with SCI, the Rick Hansen Foundation (RHF) and its offshoots the Rick Hansen Institute (RHI) and International Collaboration or Repair Discoveries) ICORD.

Why there is a need for three organizations with their own premises and staff, I don't know and it's not the point of today's blog.

Basically RHF funds three areas of work; quality of life programmes, translational research into the care of people with SCI, and translational research into a cure for spinal cord injury. This is where the debate starts.

As the science for a cure comes closer within reach (see a list of global clinical trials) many believe that a big organization like RHF  should be spending more money and influence to accelerate a cure, especially since a cure for sci is one of the goals of RHF. They state their goal very clearly. "A world without paralysis after spinal cord injury".

I will be clear, I am part of the group that believes RHF could be doing more for a cure. Why do I believe this?

Looking at a list of recent scientific work being sponsored by RHI and the list of researchers and research at ICORD, I don't see that the regeneration of the central nervous system (CNS) is getting much attention.

But before I criticise I want more information on how the funds gathered by RHF are divided and more to the point, how much is spent on CNS regeneration to get us out of our chairs.

I invite you to send an email (by using the form below) to Mr. Art Reitmayer, the new CEO of RHF, congratulate him on his appointment and the 25th anniversary of Hansens's Man in Motion World Tour, and to ask a very specific question; what percentage of money is being spent by RHF directly to cure paralysis?


Don't worry if you're not Canadian. Rick Hansen has travelled the world to raise awareness about SCI and you can donate to the foundation from any country on earth. Actually, if I get an answer and I'm satisfied that a fair amount of money is being spent on cure, I'll be making a donation!


This campaign has ended
And watch for Part II
///////////////////////////////////////////////////////
Please answer my very important question


To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF)


Cc. 
Mr. Rick Hansen and Mr. Lyall Knott, Co Chairs, RHF Board of Directors
Mr. Jim Watson, Secretary, RHF Board of Directors
Mr. George Gaffney, Treasurer, RHF Board of Directors


RHF Board of Directors
Mr. Matthew Bosrock
Ms. Sally Douglas
Mr. Perry Goldsmith
Ms. Amanda Hansen
Mr. Jonathan Kallner
Mr. Tod Leiweke
Ms. Sue Paish
Mr. Peter Ufford
Ms. Christine Day


Mr. Bill Barrable, CEO, Rick Hansen Institute,
Dr. Tom Oxland, Interim Director, ICORD


On the 25th anniversary of Rick's heroic journey to cure paralysis I would like to congratulate you on your recent appointment as CEO of the Rick Hansen Foundation. If Rick believed, twenty five years ago, that a cure for paralysis was possible, RHF should feel that a cure is now an inevitability in light of recent scientific progress.
As a person concerned about spinal cord injury (SCI) I believe that the appointment of a new CEO at such an important juncture allows RHF to accelerate its work towards a cure. As we all know a cure will not come from hope alone but through hard work, perserverence and the support of science.
However, I am concerned that RHF may have lost some focus in the pursuit of a cure for spinal cord injury. My concern stems from information posted on both the Rick Hansen Institute and ICORD (both established and funded by RHF) websites. Looking at this information I do not see central nervous system (CNS) regeneration as the top priority of either of these two groups.
Therefore 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.
I realize that care and quality of life work is important for those living with SCI, but a cure that is showing itself to be within our reach is just as important and is actually the ultimate form of care/quality of life.
Thank you for reading this and I hope for an answer to my question in the very near future.

Advancing world knowledge

World knowledge took a giant leap forward with the publishing of a new Kinsey Institute report.

It was quite the report where you can see research dollars at work to 'advance world knowledge' which is one of the goals of the Kinsey Institute.

This groundbreaking study flies in the face of conventional wisdom.

Cuddling is more important to men than women, survey says

But what's the point? Well, according to Jennifer Bass, director of communications at the Kinsey Institute, "This study makes it clear our assumptions aren't always borne out by research."

So the point of this study was to show that our assumptions aren't always correct. Wow! I always thought that my assumptions were correct. I guess, I'll have to rethink my assumptions.

Well, just so the Kinsey Institute doesn't try to get any research dollars for spinal cord injury under the pretext of research in order to 'advance world knowledge', I'll give them some of my findings for free.

Ground breaking research by Dennis Tesolat

• People with spinal cord injury have more difficulty walking than those without spinal cord injury.
• Men with spinal cord injury tend to drink more beer than similarly injured female subjects.
• Spinal cord injury impacts on sexual function.
• People with SCI spend more time in the bathroom per visit than non-handicapped people.
• Those with SCI don't find lounging in the chairs to be a comfortable activity.
• Assumptions that living with SCI is something that you can adjust yourself to, proven wrong.

If the Kinsey Institute has any sex type questions for me, they can write me and I'll answer to try to save them some money as long as they agree to put their money into real research for the real problems facing the world.

From the European Spinal Cord Injury Federation (ESCIF)

Good news from ESCIF!

Download PDF here.

Also available in the following languages: 

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STATEMENT ON SPINAL CORD INJURY REGENERATIVE RESEARCH JUNE 2011

About 2.5 million people live with a spinal cord injury (SCI) globally. In Europe at least 330,000¹ individuals suffer from the condition, with about 11,000 new cases every year. Apart from the disastrous social and human consequences², a recommendation from the Council of Europe (REC 1560 (2002))³ highlights the huge economic cost⁴ incurred and concludes “Council of Europe member states should make greater concerted efforts with a view to supporting and financing research in this area.’’

The European Spinal Cord Injury Federation (ESCIF) has been committed to supporting and promoting SCI research since its foundation in March 2006. The federation has been actively involved in initiating information-gathering projects among its members and has collaborated with SCI professionals and researchers in European research efforts. The ESCIF statutes underline the federation’s support for research that will enhance the quality of life of people living with SCI – but do not mention research into functional recovery. In 2006, in Europe, the possibility of a “cure” for paralysis seemed a rather remote prospect.

Since then, however, neuroscience has made significant strides towards curing paralysis so that some degree of functional recovery is now a realistic goal. Many promising lines of research are currently undergoing clinical trials across the globe and many more are preparing to go to human trials. In order to promote scientific breakthroughs and their successful translation to humans, substantial support, funding and infrastructure is essential.

We, ESCIF, representing hundreds of thousands of people living with SCI throughout Europe, strongly support regenerative research for spinal cord injury to help reverse paralysis in those millions already injured, and those yet to be.

Therefore we urge the Council of Europe member states, the EU and the EU member states to support and invest in regenerative research for spinal cord injury by:

• Increasing funding for basic, translational and clinical aspects of regenerative research for spinal cord injury

• Enabling timely translation of promising lines of research from laboratory to the bedside through sufficient funding, efficient infrastructure and collaborative networks

• Facilitating the adoption of suitable regulation and legislation to allow for efficient and timely translation of promising lines of research without compromising patient safety and ethics

• Setting up and implementing a Spinal Cord Injury Cure Plan making the cure of SCI a national and trans-national priority

Lastly, it should be remembered that promising regenerative research in the field of spinal cord injury will also contribute to research for other neurological conditions such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Parkinson’s, and Alzheimer’s.

The Executive

EUROPEAN SPINAL CORD INJURY FEDERATION

www.escif.org

Contact: president@escif.org

¹ Source: Recommendation 1560 (2002) 1 /Council of Europe Towards concerted efforts for treating and curing spinal cord injury

² Consequences of a spinal cord injury include: Loss of the use of limbs, loss of sensation, lack of control of bowel/bladder and sexual function, plus untreatable neuropathic pain, spasticity and threat of infection, inability to breathe (high cervical injuries)

³ Recommendation 1560 (2002) 1 /Council of Europe op.cit.

⁴ Cost generated by SCI: ‘’In the United States, the aggregate costs of spinal cord injury have been estimated at US$9.73 billion per year’’. Source: Recommendation 1560 (2002)1 / Council of Europe op.cit.

Being a little nuts never killed no one

I made the builder raise his eyebrow at me the other day, and then at the end of our talk I confirmed in his mind that I was a little nuts.

The builder? That's right.

Senbayashi shopping street

After almost a year of humming and hawing I have decided to stay in my adopted hometown of Osaka and in my own house. Osaka is a great place and if it weren't, I wouldn't have lived here for the past seventeen years. I live close to the Senbayashi area of Osaka and everything is at my fingertips. Want a drink, something to eat? It's there. Five minutes to the subway and fifteen minutes to the train. Even when it's raining I go through the covered shopping street (in the picture to the right) and don't even get wet.

About my house; why is it so great? The reason is simple, it's MY house and for a house in the middle of a crowded city, it's quite roomy inside and out. I have a relatively big driveway (and no car to jam it up) and even some space behind my house (which is rare). I grew tomatoes and peppers in this space and built stuff. I'd come home in the hot Osaka summer, go to the back, open a cold beer, watch my tomatoes grow, and sand wood for hours. The only problem with my house now is that it's a three story house with the bath on the third floor, so we had to consider what to do.

I had a few options after I got paralyzed. The first option was to sell this place (which I had built and only lived in for about a year and half before this happened to me) and build a two story house which is completely barrier free and accessible. It would have been like preparing for a life of paralysis, so I said NO!

The other option was to move back to my hometown of Woodstock, Ontario where land is cheap and build a nice bungalow which would also be totally accessible for a wheelchair user. As much as I would love to live back close to my family and friends, it would have again been preparation for life in the chair. Once I considered this, I decided that it was NOT an option.

So I made the choice to renovate my house, but just minimally. We decided to build in my special area in the back. There will be a bedroom (so I can get my bed out of site), a big toilet, and a shower area. This will make the first floor completely livable.

The other options which I discarded were what made the builder raise his eyebrow. We talked about building a cement ramp so I could use the front door (currently I have a wheelchair lift and use the sliding door off the front door). I asked the builder what I would do with a cement ramp once I walked again. The lift I can just give away, but what can I do with cement and as much as I can imagine myself walking and swinging a sledgehammer to smash the ramp into little pieces, it would be too much work.

We discussed a chair lift to the second floor at the cost of about $20,0000. Again, I asked the builder why I would want to prepare for a WHOLE life this in this chair. The other eyebrow raised.

So instead of discussing cement ramps and chair lifts my last question confirmed in the builder's mind that he was dealing with a crazy man. I interrupted his ramp and chair lift talk to ask the most important question. I asked him how hard it would be to take the roof off my new addition and build an open air bath in the future. He asked why and I told him that once I walk again I won't need the extra bedroom but an open air bath would be nice.

He left wondering what my chances were for walking again, and I think that instead of the regular thinking about NEVER WALKING AGAIN, he left with the idea that it was possible (but a little crazy).

Currently there are very few people around me that don't think I'm nuts. Two of them are my boys. They ask about the first thing we're going to do after I walk again. I tell them that we're going to carry every chair in the house to the third floor and we're going to drop them onto the cement driveway below, watch them smash, and laugh like madmen.

They don't raise their eyebrows or say that I'm crazy. They only ask one question. "Papà, how are we going to do our homework if there aren't any chairs?" 


I tell them, "You'll do it standing. I'll build you a desk with longer legs."