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.