28 September 2011

Not Just The News picks up our campaign

It was wonderful to see that our campaign to get answers from the Rick Hansen Foundation has been picked up by a social media news site in Prince Edward Island, Canada.

Like I've always said, when we work together - we'll get results.


What’s wrong with the Rick Hansen Foundation?

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.

27 September 2011

Q&A with the Rick Hansen Foundation

Question 1.
Please answer my very important question
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF)

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.

Answer 1

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.

The Rick Hansen Foundation and The Rick Hansen Institute

Question 2
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.

Answer 2
Dear Dennis
Rick Hansen started a journey 25 years ago with drive, determination and a dream to make the world more accessible by raising awareness of the potential of people with disabilities, and to find a cure for spinal cord injury (SCI). In 1985, fuelled by these two big dreams, Rick began his Man In Motion World Tour, a journey that spanned more than 40,000 km through 34 countries and took two years to complete.
The generosity of people who were inspired by Rick’s dream resulted in over $26M in donations. These funds helped establish and sustain the work of the Rick Hansen Foundation (RHF), which today, has leveraged those funds to over $245M, and continues to honour and focus on supporting the original dreams of Rick’s Tour creating an accessible and inclusive society and supporting the search for a cure.
Since inception, 81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives, through the support of charitable programs and research grants.
RHF initially granted millions over the years to fund basic science research through fellowships, science leadership and chairs, grants, infrastructure and studentships. Today RHF focuses its granting and funding on a collaborative model that brings the SCI research community together to focus on newly, acutely and chronically injured individuals, through the Rick Hansen Institute (RHI). RHI is the Foundation’s strategic innovation that is creating a Global Clinical Trials Network, connecting 70 SCI-related sites from around the world. These sites will be able to conduct Multi-Center Clinical Trials using research discoveries, including CNS, from anywhere on the planet to apply to people with SCI to accelerate progress towards a cure.
We trust this information clarifies our response and helps you understand the nature of our work. For further information, please visit our website atwww.rickhansen.com.

Rick Hansen Foundation

Question 3

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.

Art Reitmayer

Question 4
His Excellency The Right Honourable David Johnston, Governor General of Canada,
As the patron of the Rick Hansen Relay starting on 24 August in Newfoundland, Canada I am writing you to wish the Rick Hansen team success in this endeavour.  

The work that Rick Hansen, with the backing of the Canadian government, has done for those living with paralysis in terms of accessible cities and quality of life programmes has been very appreciated.  I also share Mr. Hansen's dream of a 'world without paralysis after spinal cord injury' and believe that the new advances being made in the field of central nervous system (CNS) regeneration will bring us this dream.  

To this end, many people interested in a cure for paralysis have been writing to the Rick Hansen Foundation regarding it's financial commitment to CNS regeneration, but have not been able to receive a satisfactory response. 

You can see the questions and answers at http://bit.ly/nPCkr5.  

Undertsanding that this may not be something that can be easily answered by email, a representaitive group from Canada, Italy, Japan, and Spain recently wrote to RHF to ask for a meeting regarding the issues raised in the emails. I am sorry to report that even though a response was received, the issue of a discussion was ignored.  

I ask you as the Governor General of Canada and patron of the Rick Hansen Relay to relay my desire for real dialogue with RHF in regards to the urgency of a cure for paralysis and how we in Canada and the international community can better cooperate to achieve Rick Hansens's dream.  I look forward to your response and any help that you may offer.