I'm writing to the Governor General, and I'll tell you why in a second.
24 August is the start of the Rick Hansen Relay which marks the twenty-fifth anniversary of his famous world tour to raise awareness and funds to improve the quality of life for those living with spinal cord injuries (SCI) and to find a cure for paralysis. This relay which will transverse Canada starting in Newfoundland and ending on 22 May in Vancouver, British Columbia should also commemorate the great work that Rick Hansen has done for all of us with SCI.
But I must admit that I am disappointed by the Rick Hansen Foundation's (RHF) unwillingness to have dialogue with those living with SCI.
Many people wrote to the RHF's new CEO, Art Reitmayer, to ask for information on the foundation's spending on central nervous system (CNS) regeneration, i.e., a cure for spinal cord injury, but we didn't get an answer to the question. We did this twice hoping to get some answer and when our questions couldn't be answered, five of us even wrote asking for a skype meeting to discuss our questions 'in person'. We got an email back, but the request for dialogue was just ignored. You can see all the correspondence here.
I have to admit that at first I thought a skype meeting was a little nuts, but then I saw a lot of other groups who have real dialogue with people using today's technology. In fact, I got two such emails just this morning. Both were from the California Institute for Regenerative Medicine. One was for a webinar on scaffolding (like building a bridge of the lesion in the spinal cord), and the other one was for meeting the new chairman of the institute which you can do by telephone. This is dialogue and it's easy because of the great advances in telecommunications.
So, I think it's time to write to the Governor General of Canada to see if he can help us. The Governor General is the patron of the Rick Hansen Relay and maybe with his intervention the Rick Hansen Foundation can find a way to have dialogue. We don't wish to just sit, cheer, and donate. We want real dialogue leading to real information, because we all share Rick Hansen's internationalism to build 'a world without paralysis after spinal cord injury.'
A skype meeting, a real time Q&A using email, a webinar, anything that is dialogue is fine with me.
Please fill out this short email and it will be sent directly to His Excellency, The Right Honourable David Johnston, Governor General of Canada.
If you can't see the email below, please click here.
Cure Paralysis NOW!
23 August 2011
Love is better than anger
Thanks Jack
 |
My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world. ~Jack Layton~ |
13 August 2011
The paralyzed are standing up
At 3:30PM on Friday, 12 August 2011 (Vancouver time) a letter was sent to the Rick Hansen Foundation (RHF) from five spinal cord injured people in Canada, Italy, Japan, and Spain.
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The point of the letter is to ask for direct talks between the foundation and people in wheelchairs to discuss RHF’s past, present, and future commitment to a cure for spinal cord injury.
Our goal is to make sure that money that is raised in the name of cure, is spent on cure, and we hope to increase the participation of spinal cord injured people from all over the world in the Rick Hansen Foundation’s stated goal of a cure for spinal cord injuries.
We feel that as an organization dedicated to ‘a world without paralysis after spinal cord injury’ RHF can play an even greater role in curing paralysis. RHF is one of the biggest, most well financed organizations dedicated to spinal cord injury in the world and because of this could unite the international community in achieving a cure in the near future.
We don’t want to just donate and cheer, we want to play a role in achieving Rick Hansen’s dream that started twenty five years ago.
The letter, as it was sent, can be seen below. And everyone will be informed of their answer.
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07 August 2011
An answer from Rick Hansen Foundation
We finally got an answer from the Rick Hansen Foundation (RHF) in regards to our question about the percentage of funds spent/being spent on central nervous system (CNS) regeneration, i.e., a cure for spinal cord injury.
Now, it wasn't the exact answer that we were looking for as their number, 81%, was the spending on both cure and quality of life projects (in my opinion, both important as long as they are evenly spent on), but at least we got a number this time.
And now it's time to examine the answer and see what we have learned from this.
1. We have learned that persistence counts for something. If everyone had given up after the first email we wouldn't have had any number to work with. We know that RHF responds and that your emails made them respond. Next time someone tells you that your efforts are meaningless, tell them it's not true.
Now some quotes from the letter and my thoughts.
2. "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)."
So when people say that Rick never started his journey to cure SCI, you can tell them that the Rick Hansen Foundation was set up with a goal to cure paralysis from day one.
3. "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."
Rick Hansen should be applauded for his international outlook. When people tell you have no right to question this foundation because you're not Canadian, you can tell them that you look at a cure for spinal cord injury with the same internationalism that Rick has.
4. "...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."
Rick's goal is to cure paralysis and they have the money for it. It's our job in the international spinal cord injured community to make sure that money goes to Rick's dream of a cure for paralysis.
5. "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."
This is the number (well not exactly) that you demanded to know. Now we need to find out a little more deeply exactly how much goes to regeneration, how it's decided, and how we can help in securing Rick's dream.
6. "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."
Here's the answer that was sent by the Rick Hansen Foundation.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.
Regards,
Rick Hansen Foundation
Now, it wasn't the exact answer that we were looking for as their number, 81%, was the spending on both cure and quality of life projects (in my opinion, both important as long as they are evenly spent on), but at least we got a number this time.
And now it's time to examine the answer and see what we have learned from this.
1. We have learned that persistence counts for something. If everyone had given up after the first email we wouldn't have had any number to work with. We know that RHF responds and that your emails made them respond. Next time someone tells you that your efforts are meaningless, tell them it's not true.
Now some quotes from the letter and my thoughts.
2. "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)."
So when people say that Rick never started his journey to cure SCI, you can tell them that the Rick Hansen Foundation was set up with a goal to cure paralysis from day one.
3. "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."
Rick Hansen should be applauded for his international outlook. When people tell you have no right to question this foundation because you're not Canadian, you can tell them that you look at a cure for spinal cord injury with the same internationalism that Rick has.
4. "...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."
Rick's goal is to cure paralysis and they have the money for it. It's our job in the international spinal cord injured community to make sure that money goes to Rick's dream of a cure for paralysis.
5. "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."
This is the number (well not exactly) that you demanded to know. Now we need to find out a little more deeply exactly how much goes to regeneration, how it's decided, and how we can help in securing Rick's dream.
6. "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."
Global and anywhere-on-the-planet is exactly how we need to understand a cure. Now we need to ask about how we can be part of Hansen's global movement. Not just to cheer and raise funds, but to help lead and make sure funds go to regeneration.
One person called your efforts "bitching and complaining", but I salute you for your perseverance. Remember, we're not going to win a cure for paralysis tomorrow but our input in the meantime is what will make a cure come earlier. Don't leave it to the scientists, the foundations, and the corporations; we must take a positive role in all of this.
Now it's time to talk directly with the Rick Hansen Foundation...
To this end, myself and a few others who played an important role in getting people to send emails to RHF in the first place will send a letter to the CEO, Mr. Art Reitmayer to ask for talks by skype.
The point of the talks will be as follows.
1. To find out 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 abandonded due to financing.
We will let you know ALL updates.
To this end, myself and a few others who played an important role in getting people to send emails to RHF in the first place will send a letter to the CEO, Mr. Art Reitmayer to ask for talks by skype.
The point of the talks will be as follows.
1. To find out 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 abandonded due to financing.
We will let you know ALL updates.
Here's the answer that was sent by the Rick Hansen Foundation.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.
Regards,
Rick Hansen Foundation
31 July 2011
Second Question to the Rick Hansen Foundation
Thank you for sending your email to the Rick Hansen Foundation.
Unfortunately the response they sent you does not include a figure for the percentage of funds being spent on a cure for spinal cord injury.
Rick Hansen has traveled all over the world talking about spinal cord injury, so therefore you have a right to know the answer to this question.
I know it’s not enough, but at the moment, I urge you to write back with a very simple question to show them that you are not happy with their response.
This campaign has now ended. Please stay tuned for the third part of the campaign.
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.
Unfortunately the response they sent you does not include a figure for the percentage of funds being spent on a cure for spinal cord injury.
Rick Hansen has traveled all over the world talking about spinal cord injury, so therefore you have a right to know the answer to this question.
I know it’s not enough, but at the moment, I urge you to write back with a very simple question to show them that you are not happy with their response.
This campaign has now ended. Please stay tuned for the third part of the campaign.
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.
Can't get a straight answer from Rick Hansen Foundation!
This week, paralyzed people from around the world sent a real simple request for information to Mr. Art Reitmayer, the CEO of the Rick Hansen Foundation (RHF). “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.” We got an answer to something, but not to our question. | |
The Question | The Answer |
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF) 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, perseverance 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. Dennis Tesolat | 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. Regards, The Rick Hansen Foundation and The Rick Hansen Institute |
27 July 2011
Please send a question to Rick Hansen Foundations new CEO
Lately there has been a lot of debate going on in the spinal cord injured community about the commitment to a cure for spinal cord injury (SCI) of one of the biggest and most well funded global organizations dealing with SCI, the Rick Hansen Foundation (RHF) and its offshoots the Rick Hansen Institute (RHI) and International Collaboration or Repair Discoveries) ICORD.
Why there is a need for three organizations with their own premises and staff, I don't know and it's not the point of today's blog.
Basically RHF funds three areas of work; quality of life programmes, translational research into the care of people with SCI, and translational research into a cure for spinal cord injury. This is where the debate starts.
As the science for a cure comes closer within reach (see a list of global clinical trials) many believe that a big organization like RHF should be spending more money and influence to accelerate a cure, especially since a cure for sci is one of the goals of RHF. They state their goal very clearly. "A world without paralysis after spinal cord injury".
I will be clear, I am part of the group that believes RHF could be doing more for a cure. Why do I believe this?
Looking at a list of recent scientific work being sponsored by RHI and the list of researchers and research at ICORD, I don't see that the regeneration of the central nervous system (CNS) is getting much attention.
But before I criticise I want more information on how the funds gathered by RHF are divided and more to the point, how much is spent on CNS regeneration to get us out of our chairs.
I invite you to send an email (by using the form below) to Mr. Art Reitmayer, the new CEO of RHF, congratulate him on his appointment and the 25th anniversary of Hansens's Man in Motion World Tour, and to ask a very specific question; what percentage of money is being spent by RHF directly to cure paralysis?
Don't worry if you're not Canadian. Rick Hansen has travelled the world to raise awareness about SCI and you can donate to the foundation from any country on earth. Actually, if I get an answer and I'm satisfied that a fair amount of money is being spent on cure, I'll be making a donation!
This campaign has ended
And watch for Part II
///////////////////////////////////////////////////////
Please answer my very important question
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF)
Cc.
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.
Why there is a need for three organizations with their own premises and staff, I don't know and it's not the point of today's blog.
Basically RHF funds three areas of work; quality of life programmes, translational research into the care of people with SCI, and translational research into a cure for spinal cord injury. This is where the debate starts.
As the science for a cure comes closer within reach (see a list of global clinical trials) many believe that a big organization like RHF should be spending more money and influence to accelerate a cure, especially since a cure for sci is one of the goals of RHF. They state their goal very clearly. "A world without paralysis after spinal cord injury".
I will be clear, I am part of the group that believes RHF could be doing more for a cure. Why do I believe this?
Looking at a list of recent scientific work being sponsored by RHI and the list of researchers and research at ICORD, I don't see that the regeneration of the central nervous system (CNS) is getting much attention.
But before I criticise I want more information on how the funds gathered by RHF are divided and more to the point, how much is spent on CNS regeneration to get us out of our chairs.
I invite you to send an email (by using the form below) to Mr. Art Reitmayer, the new CEO of RHF, congratulate him on his appointment and the 25th anniversary of Hansens's Man in Motion World Tour, and to ask a very specific question; what percentage of money is being spent by RHF directly to cure paralysis?
Don't worry if you're not Canadian. Rick Hansen has travelled the world to raise awareness about SCI and you can donate to the foundation from any country on earth. Actually, if I get an answer and I'm satisfied that a fair amount of money is being spent on cure, I'll be making a donation!
This campaign has ended
And watch for Part II
///////////////////////////////////////////////////////
Please answer my very important question
To: Mr. Art Reitmayer, CEO, Rick Hansen Foundation (RHF)
Cc.
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.
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