09 September 2012

To Rick Hansen Institute: we don't need paper heroes

After reading two very disheartening announcements from the Rick Hansen Institute (Translational Research Advisory Committee - TRAC, and the 2011/12 Rick Hansen Institute annual report), the biggest beneficiary of the Rick Hansen Foundation, I decided to write a letter to their CEO, Mr. Bill Barrable.

The point of the letter is, very basically, spend and research on chronic spinal cord injury or get out of the game and stop raising false hope in the community.

Simply put, a cure chronic spinal cord injury is not about slogans like "a world without paralysis after spinal cord injury", but about spending on the right research. If RHI is not interested in spending on curing chronic spinal cord injury; they should just be clear with the community.

The letter below was sent today via email and fax and I will let you all know their response. I know that you're all itching to make your voices heard, but for now, let's see their response. As always, I hope they prove me wrong. Cure is not about my ego and I would love to admit that I'm wrong if money is going to cure chronic SCI. I hope others, without naming names, can also leave ego out of it. 

We want cure, not paper heroes.

Dennis Tesolat
Japan, Osaka-shi,

8 September 2012

Via FAX & Email

Bill Barrable, CEO
Rick Hansen Institute
6400 - 818 West 10th Avenue,
Blusson Spinal Cord Centre,
Vancouver, British Columbia,
FAX: +1-604-707-2121
Email: bbarrable@rickhanseninstitute.org

Dear Mr. Barrable,

My name is Dennis Tesolat and I have been involved with community questions directed to the Rick Hansen Foundation in regards to their spending on a biological cure for chronic spinal cord injury.

With great expectations I read about your new TRAC committee and its members along with the RHI 2011-2012 annual report.  I firmly believe that the TRAC committee could have a very good impact on decisions made by the RHI board.  I had two serious concerns after reading through these reports.  My first is that in looking at the members of this committee, I don’t see anyone who has been involved  in research into such a cure except for Drs. Fehlings and Kwon.

My other concern is with your annual report.  From my reading of this, it would appear that your efforts are concerned exclusively with preventing paralysis as an outcome of spinal cord injury, while at the same time trying to improve quality of life for those of us already paralyzed.

In my opinion, this is unacceptable from an organization whose slogan is “a world without paralysis after spinal cord injury”.  Please tell me that I am wrong. Please tell me that I missed very important things in your report and that you are contributing to specific efforts towards an actual physical cure for chronic spinal cord injury.

If you cannot point these efforts out to me, I would suggest that RHI be very clear with the community and tell people that your goal is NOT a physical cure for chronic spinal cord injury.

Without this announcement, countless people currently living with paralysis will make donations in the belief that you are working on an actual cure for them. There will be continued resentment and anger from the community when they find out they have been misled again.

I also believe that Members of Parliament and Legislative Assemblies who vote funds for your organization do so under the impression that RHI is seeking a cure for both acute and chronic paralysis. If your organization is not actively supporting efforts towards regeneration, you also need to be clear on this with your major funding sources.

More insidiously, organizations around the world which see you as a leader in the field may believe that you are offering leadership towards a cure for chronic spinal cord injuries.  If you do not offer this, there will be very deleterious effects on the overall field.  We therefore suggest that you actively step away from campaigning in this area and offering leadership unless you're willing to actually fund the scientific research that will lead to regeneration.

Your silence around this issue is damaging to both the community and other spinal cord injury associations. I hope that, unlike RHF, you will break the silence around this issue and answer clearly and honestly.

Dennis Tesolat

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