Welcome to the Apparelyzed Spinal Cord Injury and Cauda Equina Syndrome Support Forum
- Start new topics and reply to others
- Subscribe to topics and forums to get email updates
- Get your own profile page and make new friends
- Send personal messages to other members.
- Talk to others in real time in the Chat Room
Second Question To Rick Hansen Foundation
Posted 31 July 2011 - 01:26 PM
Therefore I have prepared another question just like before and you can send it off in a minute. Please pass this along to your friends and colleagues.
We shouldn't just ignore the response, we should ask again as a group.
Go here to send an email.
Let's work together because we'll get the most progress.
Posted 03 August 2011 - 12:23 PM
I think you are attacking a good organisation, when you would do better if you told researchers you don't want mickey mouse cures.
Did you read the question?
I didn't know that asking a question and attacking something were the same thing. The question has been asked by others in the past and there hasn't been an answer so I figured asking as a group was the best thing.
Cure is a major part Rick Hansen Foundation/Institute mandate. Therefore asking how much is being spent on it when people donate because of it is not an attack. If you can tell me how this as attack, I'd be happy to hear it.
Posted 03 August 2011 - 12:39 PM
I read the blogs at RH and some comments were very very cruel from your group. But, lets say Hansen does support funding for a cure, how would you know it's being spent wisely? Are you watching how the research orgs use the grants? Is it going to research that is looking to market a treatment that can't even beat a placebo? Did you ever think that currently there isn't any real promising research for them to invest in?
Posted 03 August 2011 - 10:17 PM
Posted 04 August 2011 - 03:20 AM
I think Rick Hansen can be a valuable asset to people with sci. We don't have Chris Reeves anymore and Rick has done some amazing things in the past, like paying for the research that took people off vents. I think you might start by not complaining why he isn't funding alot of research, but ask him why? As I said before maybe he doesn't see anything that can be helped with his funding that would lead to something worthwhile. I think you know by now I am agaist the researchers that constanly talk about funding, funding and more funding, and those researchers have a terrible track record of using your money to market a treatment that doesn't work, while they have licensing agreements.
I'll ask again. Did you read the question that was sent? No one has said that Rick Hansen isn't valuable to people with SCI. No one said that he hasn't done some amazing things. No one has complained that he isn't funding a lot of research. People are asking a very simple question to the foundation whose slogan is, "a world without paralysis after spinal cord injury." The question is, how much money is going into regenerative research?
If the foundation doesn't think there is any worthwhile research going on, that would be a very good first answer, because then people could show him the valuable research is going on.
You're correct that the problem is not only funding, but I think a lack of collaboration is also a major problem. A person like Rick Hansen and his foundation could have a big impact by tying funding to collaboration. Don't you think so.
One reason that scientists are forced to go the route of marketing their product is because without this, they will have no money. State funding (the Hansen foundation gets a very large chunk of their money from the state) will make any possible future cure much more inexpensive in the future.
Again, you're 100% correct that Rick Hansen can have and has had a profound impact on people with sci, no one has said anything to the contrary in the email that they have signed and sent.
Posted 04 August 2011 - 01:15 PM
Posted 05 August 2011 - 02:29 AM
That being said, and that Rick Hansen funded a study to take people off a vent in my mind was wonderful. Thank god he doesn't waste funds on useless treatments.
Posted 05 August 2011 - 03:08 AM
Posted 05 August 2011 - 04:33 AM
So, answer my questions. You complain about the Hansen org not answering yours? Pray tell where on earth should he invest? Speak up just like you want rick to speak up. And all you are doing is complaining and blaming him. Should he donate to Wise? After his MP was a hoax? And isn't it great I can say that? And look at the stunning info on 4-ap a drug that used to sell for pocket change, but now it costs over 1,300 bucks a month and it couldn't beat a placebo, should we invest in more of that? Could you get away with saying that on CareCure? So what on earth do you believe in? In my mind I am glad rick isn't wasting funds and directs them to areas that help now.
You can send me question after question after question but if I spent my whole life writing on these boards I wouldn't get anything else done. Also, you understand that when I send you a private message, it's that, private, but if you wish not to respect that we can just talk here.
1. Do you understand how research for a cure needs to work? I don't know anyone that believes there is going to be one magic bullet that will work and set us walking. New research needs to be tested to find it's deficiencies so we can see what needs to be added to it. So even things that have been looked at before can still be improved to see what it could be matched with. Therefore OEC work going on in New Zealand should not be thrown away because it's never shown useful. Could it be matched with Decorin which hasn't been tried yet, they want to consider this. Then there is another work by Davies with astrocytes that has shown good results in animal studies. There is work going on in a number of countries with scaffoldings using biomaterials, and even old things like neurogel have never seen the light of day due to a lack of money. Neurogel was first discovered in 1994 in Canada but currently it's stuck. About Dr. Young's MP being a hoax, really? Can you prove this? He's actually doing something interesting because he's trying a combination therapy, this type of thinking needs to be encouraged. Lithium and cord blood, lithium and OEC, OEC and scaffoldings. There is a great potential but because everyone is running around trying to get funding for new stuff (you can't make money on lithium because it's already around), many things are overlooked and let go. This is where state or foundation funding could play a great role.
So there are numerous things that could be funded. But like I said to you originally a big group like the Hansen Foundation could play an even bigger role than funding by actually getting all these folks together. By tying the funding together with collaboration. Small groups cannot do this even though they are able to fund individual projects.
2. So if Hansen's foundation doesn't think there are things worth funding, shouldn't they say this? (actually this is your opinion as the Hansen group hasn't said this) Do you think that they should use the slogan, "a world without paralysis after spinal cord injury," if they aren't going to fund that research? Remember, the question that was sent asked only to show the funding percentages but your take on things seem completely different, so I would like to ask you a question. Do you think CNS regeneration should be funded? Do you think CNS regeneration is possible?
3. In regards to people being pissed off on his facebook page, well they are, and I can't stop people from being pissed off. What I am trying to do is to give people a forum to get the details. Remember also that the problem is not with RHF's unsatisfactory answer, the problem is that they have not answered. When you use a powerful slogan about cure, you do need to back it up with figures or people that donate or want to donate don't know what they've donated to. If RHF's goal is just care and quality of life, that's fine because they are both important areas of work, but then they need to drop the line about cure to be fair to their donors.
4. In regards to ventilators and BB, do you understand that regeneration of the central nervous system will also take care of these problems? Also, no one is telling RHF to stop funding projects to deal with these independently of regeneration, we're just asking for the spending figures on regeneration. Are you of the opinion that people who are sending this email are asking for a complete stop on care and quality of life spending?
Anyhow, I've tried to answer all your questions. If I've missed any, please forgive me and I'll try to answer if you tell me which ones I've missed. Also, if you could answer the sentences marked with question marks, it would be appreciated.
Posted 05 August 2011 - 12:46 PM
Posted 05 August 2011 - 12:57 PM
There's the paradox, such a sense of urgency for something so far away. And I do believe some are so set on a cure and that they say if there was a cure you wouldn't need care. Or that a cure would also fix bowel and bladder and vent. I rather see that before I could get some faint movement in my legs that would probably be placebo effect and of no real use. I do think one day there will be a decent treatment for sci, but at present even many scientists say it's so over hyped. So I'm happy with RHF. To me it was a cure when he got people off vents. I'm done in this thread. You have a right to your opinion.
Did I answer your questions? You didn't answer any of mine? Didn't even talk about the science that I mentioned.
I guess it's easier just to say that a cure is far away. Just showed who you are.
Posted 05 August 2011 - 08:16 PM
Posted 06 August 2011 - 04:52 AM
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 Rickís 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 Rickís 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 Foundationís 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 at www.rickhansen.com.
Rick Hansen Foundation
Now let's think a little.
Posted 07 August 2011 - 07:59 AM
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 Rickís 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 Rickís 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 Foundationís 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 RHF...
This along with with the full email from RHS is also available at http://stemcellsanda...foundation.html