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Thread: Second question to Rick Hansen Foundation

  1. #51
    I just finished reading the annual report. I derived the following answer:

    RHF and ICORD spend 'none' of their funds on the regeneration of the CNS for chronic SCI.

    The translational initiative focuses upon clinical best practises for acute and chronic care and rehabilitation rather than translation of lines of science for regenerating the CNS. The clinical trial network seems to be dedicated to acute 'neuroprotective' strategies.

    Still no mention of figures though. Make of it what you will.

  2. #52

    WTF! How deep into the send can you push your head?

    Are you in love with RHI, RHF, ICORD?

    This is all hot air, nothing more nothing less.
    Last edited by paolocipolla; 08-06-2011 at 05:50 AM.
    In God we trust; all others bring data. - Edwards Deming

  3. #53
    The answer is in. And now before I comment, I am going to seriously read it and see what it says. Here it is for those who may not have yet seen it, or didn't write the email.

    //////////////////////////////////////


    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 at www.rickhansen.com.

    Regards,

    Rick Hansen Foundation
    ///////////////////////////////////////

    Now let's think a little.
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  4. #54
    Senior Member 0xSquidy's Avatar
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    Just a little more BS.

    8 out of 10 dollars went to "search for a cure (would love to see what they understand for that) AND quality of life grants". Although they've been asked for only the cure, precisely. There's no way they have misunderstood our question. There's no doubt they are not answering a straight question on purpose. There's now no doubt (if there was).

    Seriously, do they take everyone for a fool? I love their style in the "For further information, please visit our website at www.rickhansen.com", as in, for further information please fuck off.
    Last edited by 0xSquidy; 08-06-2011 at 01:04 AM.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

  5. #55
    The cuestion should be how much of that $245M really go to research, and what projects they supported, with number and names. Transparency should be mandatory in this kind of organizations.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

  6. #56
    Charitable organizations in Canada are regulated under the Canadian Income Tax Act through the Charities Directorate of the Canada Revenue Agency.

    The Charities Directorate of the Canada Revenue Agency is responsible for:

    determining which organizations will be granted registered charity status.
    providing information to registered charities on legal compliance issues.
    receiving and maintaining a database of Canadian registered charities with copies of the T3010 registered charity information return.
    auditing charities to check compliance with their responsibilities and obligations.
    providing general information to the public on donations to registered charities.

    So there is another way of getting more info if they are registered and regulated.

  7. #57
    so can we now retire this thread to the forum to bitch and complain?

    http://sci.rutgers.edu/forum/showthread.php?t=80733

  8. #58
    Quote Originally Posted by quadfather View Post
    so can we now retire this thread to the forum to bitch and complain?

    http://sci.rutgers.edu/forum/showthread.php?t=80733
    Dear Mr Quadfather,
    I don't see what people wanting to make sure that money raised in the name of cure is going to cure is bitching and complaining. I guess you're one of those who don't believe that people have a right to ask and query and do something about it they are not satisfied.

    Where you see bitching and complaining, 138 people in both questions, felt that they had a right to ask. We asked and now we have to consider what is next.
    Please stop insulting people by taking their questions as bitching and complaining. You should really consider growing up.

    I hate to be harsh with people, and you can see all my posts, I rarely am, but when you talk with those who think they know the answer to everything, done that before, seen that before, there is no cordial way to respond.
    Last edited by StemCells&AtomBombs; 08-07-2011 at 03:18 AM. Reason: forgot to write something
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  9. #59
    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."
    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...
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  10. #60
    This along with with the full email from RHS is also available at http://stemcellsandatombombs.blogspo...oundation.html

    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."
    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://stemcellsandatombombs.blogspo...oundation.html
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

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