As Rick Hansen starts his 25th Anniversary Tour, some people living with spinal cord injuries are asking questions about where the money is being spent
By Paolo Cipolla, USA
As a person living with paralysis due to Spinal Cord Injury (SCI) I am interested in medical research in the field. Since the first time I have heard about Rich Hansen I knew that to find a cure for SCI was one of his dreams and he was working on it to make a cure become a reality.
In the last few years I have been attending several international SCI research meetings to learn as much as I can about the field.
Around the world there are many SCI organization that say they support medical research to find a cure for SCI. Rick Hansen Foundation (RHF) is one of the biggest if not the biggest of the world.
To find a cure for SCI I have learned it is necessary to find a way to repair the damage of the spinal cord. Many animal studies have indicated that it is possible to repair the damage to the spinal cord, but more research is needed to develop effective therapies applicable on humans.
That is well known for people that follow SCI research, so using common sense people expect RHF is funding many research projects focusing on the regeneration of the spinal cord.
Some time ago I went on RHF web site to find out what they are doing exactly to find a cure for SCI.
With my deep disappointment I couldn’t find anything significant regarding the regeneration of the spinal cord, so I decided to involve some friends for a deeper “research”.
Together with Dennis Tesolat, author of the blog “Stem Cells & Atom Bombs”, and other friends we researched the web sites:
– Rick Hansen Foundation:
– Rich Hansen Institute (funded by RHF): http://www.rickhanseninstitute.org/
– ICORD (International Collaboration On Repair Discoveries) that is located within the Blusson Spinal Cord Centre (BSCC) on the site of Vancouver General Hospital and is thus also a part of Vancouver Coastal Health Research Institute (VCHRI). The BSCC includes ICORD, the multidisciplinary Brenda & David McLean Integrated Spine Clinic of VCH, and the Rick Hansen Institute (RHI)
ICORD administer money coming from RHF
Unfortunately we didn’t find any significant evidence of medical research for the regeneration of the spinal cord supported by any of the organizations related to Rick Hansen. So we asked them a direct question with the following email (posted on the blog “stemcellsandatombombs”.)
The question was:
“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.”
The answer received was evasive in my opinion. It didn’t provide a simple amount or percentage, as asked as you can see at this link.
So we asked again the question link.
This time, the Rick Hansen Institute provided a reply to our percentage question.
“Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives”
But we have asked what % of funds have been spent on research for a cure and they provided a number for research (generic) plus quality of life. For more details see the link.
Understanding that the issue of research funding may not be something that can be easily discussed by email we (a representative group of Canada, Italy, Japan and Spain SCI’s) decided to ask for a conference call by Skype with the CEO, Mr. Art Reitmayer to ask about:
1. How much of the 81% is going to cure.
2. What research have they funded over the past ten years in regards to CNS regeneration?
3. How the funding is doled out.
4. How we can play a bigger role in making sure that promising research is not abandoned due to financing.
You can see the letter at this Link.
We received a response, but the issue of a discussion was ignored, so now we decided to write to the governor general His Excellency The Right Honorable David Johnston that has chosen to serve as Patron of the 25th Anniversary campaign as we hope he may understand better the importance of a constructive interaction between RHF and international people living with SCI, since Rich Hansen has rolled around the world through 34 countries.
Here is a link of the letter to the governor general.
In the last few years I have been in contact with several people from Canada living with SCI. All of them believe that Rick Hansen is investing money of his organization to make a cure happen one day soon. Unfortunately I couldn’t find any evidence of that, but many people have been donating to RHF thinking they are working to find a cure for SCI.
I think it is time that RHF becomes full transparent and answer the questions about how they are really spending money donated by people.
Paola Cipolla is an Italian-born American with spinal cord injuries. He has a degree in science, his pilot’s and flight instructor’s license in Italy. A motor cycle accident in 2004 resulted in spinal cord injuries and paraplegia. His main interest is medical research to find a cure for SCI. He has made active connections with researchers, doctors and other advocates around the world. email paolocipolla1 “at” gmail.com or Facebook.