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.
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
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