Our history with Rick Hansen

This is a big project which I'll work on little by little.
In the meantime, please see this for our full campaign about the Rick Hansen Foundation over the past few years.
I'll make it beautiful later on. 



1.  Question1 to Art Reitmayer, the CEO of the Rick Hansen Foundation in July 2011.

2.    Answer to our first question. We asked that the percentage of funds being spent by RHF on CNS regeneration and a cure for SCI be provided and they answered with this.

3.    Since they didn't answer our question, we asked again

4.    They're second answer, which didn't actually answer the question.

6.    Answer 3: August 18, 2011

Re: We would like to propose a discussion

Dear Carles, Paolo, Arcangela, Dennis and Barb,

We are responding to your follow-up questions in writing, to ensure our position is clearly understood.

As we have stated several times, the work of the Rick Hansen Foundation supports the same vision Rick expressed when he set out on his Man In Motion World Tour – to raise awareness of the potential of people with disabilities by creating accessible and inclusive communities, and supporting research for a cure.

Over the last 25 years, Rick and the Foundation have provided a strong voice and a clear vision in both these areas. The Foundation has brought diverse groups together to articulate a common goal, applied its leadership to develop the strategy and resources to achieve that goal, and encouraged these initiatives to become independent so that new ideas can be conceived and launched. Progress continues to be made and we believe that ongoing investment to the areas we have previously outlined will lead to greater outcomes in the future for people with SCI.

A list of the programs and organizations we have funded in the 2010-2011 fiscal year are listed in our annual report, which will be available next week on our enhanced website. The information included in our annual report and T3010 is shared with government, corporate funding partners, major donors, and the public.

As is the case with numerous charitable foundations, applications for funding are reviewed by a committee and recommendations are put forward to the Board of Directors for approval.  Applications must be received from organizations who are qualified beneficiaries under Canadian Revenue Agency Charitable rules and regulations.  At present, all funds for the fiscal year ending March 31, 2012 have been committed, and will be reflected in our 2012 fiscal year annual report released in the spring of 2012.

We trust we have answered your questions on this topic and as fully transparent and prudent stewards of the funds entrusted to us, we assure you that any information that we can provide through correspondence is available on 
rickhansen.com.

Sincerely,

Art Reitmayer
8.    Answer 4: No answer from Governor General

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

A: RHI hasn’t and doesn’t invest in basic or discovery research. The cost of basic science research continues to increase, with the funding required to do pre-clinical research on a potential SCI therapy in the multi-millions. In conversation with our NIH partners, RHI was advised to focus on the areas of research that are essential to translating research from the basic science discovery to the patient's own bedside, where funding is generally harder to come by.  Large public research funders like the Canadian Institutes of Health Research, the Natural Sciences & Engineering Research Council, and the National Institutes of Health (USA) fund this type of research, whereas there are few logical funders for health services research, best practices implementation (to improve and standardize SCI care), clinical trials networks, and other forms of capacity building for SCI clinical research. 

Thus, RHI has been directed to invest our federal funding in these areas that are essential pieces of translational research (patient registry and research platform, clinical research network and standardizing SCI care and outcomes across the country) that are unlikely to receive support from other funding. In this way, RHI is ensuring we are good stewards of our public funding, avoiding duplicating what is being done by our discovery science partners at ICORD. Following this strategy, RHI/RHF also contributes to seed funding for our SCI research partners at ICORD, in order to enable SCI academic researchers to do the preliminary research necessary to obtain research grants. 

Now, onto where we spend our time. About 20% of our projects deal with reducing paralysis, and another 40% or so aim to enhance physical function. Unfortunately, it is next to impossible to calculate accurately how much of our budget was spent on a cure for chronic SCI, as many of our projects target more than one expected outcome. For example, our Rick Hansen Spinal Cord Injury Registry (RHSCIR) collects data on people in Canada with an SCI, which is anticipated to help answer a number of research questions related to the cure, to alleviating secondary complications, and other areas. As part of RHSCIR, a survey of people with spinal cord injury was conducted to assess their readiness and willingness to participate in stem cell clinical trials. So this one activity within RHSCIR was aimed at the cure for chronic SCI, but it is not possible to budget this out as it is part of the larger RHSCIR project. Similar types of activities are carried out within other RHI projects, such as our Access to Care and Timing project and others.

Q: What research was done in regards to question one above?

A: We define cure as reduction of paralysis and restoration of physical function post injury. If we are strictly talking about neuro-regeneration and neuro-protection, we currently only have a handful of projects. Based on our definition of cure(s), more than half of our projects deal with reducing paralysis and enhancing physical function. Specific projects include: Access to Care and Timing, CAMPER, FES and ReJoyce. In addition to time to surgery and stem cell transplantation, RHI’s reduction in paralysis activities in fiscal year 2011-2012 also included support for two multi-centre trials examining potential neuroprotective agents: riluzole and minocycline. In fact, since 2007, RHI has supported fully half of the Canadian-sponsored clinical trials on SCI. (A full list of our projects is available in our latest Annual Report)

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

A: RHF and RHI have recently received a commitment from the Canadian government for the continuation of its programs. RHI has submitted a new five-year business plan to guide activities towards meeting its objectives using these new funds. 

Given all the work conducted by RHI and others, Canada has a unique opportunity to host clinical trials for SCI, due to greater consistency in SCI care across the country. By supporting a network of clinical researchers, creating an infrastructure for clinical trials in SCI, standardizing care, enabling standard measurement of patient outcomes, and creation of a patient registry, RHI is making it possible to trial new treatments for acute and chronic SCI as they are ready for clinical trials, which is the goal we’re all working towards.  

(RHI’s fiscal year ends March 31, 2013, so we’re currently wrapping up a number of projects started as far back as 2007. Details on new projects will be available in the new year).
21.  Answer 13

No comments:

Post a Comment