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Thread: Rick Hansen Foundation annual report

  1. #1

    Rick Hansen Foundation annual report

    You can download the annual report at http://www.rickhansen.com/Portals/0/...ual_Report.pdf

    I thought that this required a new thread or it would get missed.

    I'm sorry to say that even though the report used the cure word nine times there was nothing substantial talking about how they spent on a cure or what they spent it on.

    The most telling part of the whole report was this:
    Page 3 - Vision
    A future where people who are newly injured walk away from SCI, while those living with disabilities lead healthy, active, productive lives.

    I'm sorry but when you start with this vision, it's impossible to be a leader to cure sci.

    The bad thing is that as long as they keep using this word (which their vision clearly says they don't support), they will siphon off donations as people think that their goal is a cure for SCI and will keep on donating to RHF for a cure.

    There needs to be some kind of rule about using the word cure. Just like champagne needs to come from the Champagne region of France, this word needs some clear guidelines.

    I hate to think of RHF not being behind a cure, but this document offers to no compelling data that shows how they are spending their money and resources for a cure for SCI (even though their other initiatives are nice).

    Would like to hear comments from those who read the document.
    Last edited by StemCells&AtomBombs; 09-02-2011 at 04:42 AM.
    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

  2. #2
    - Looks like RHF isn't putting their (our) money, where their mouth is..
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  3. #3
    RHF is one of the best examples of how to make business from a disease/illness. Look to some of their 2011 numbers,

    • Salaries and benefits - 5,240,798
    • Travel and meetings - 818,620


    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

  4. #4
    Thanks for posting Dennis. An 'interesting' read. Below are the aforementioned nine uses of the word ‘cure’ in their contexts.

    1. With our partners we have established spinal cord injury (SCI) best practices, shared patient data networks, accessibility awareness, quality of life grants, school programs and grants for researchers collaborating to find a cure. p5
    Which researchers? What type of research?

    2. Funds raised by the Foundation are committed towards various innovations focused on accelerating the search for the cure, and improving the daily lives of people living with SCI. p.5
    More detail about these cure innovations would be useful.


    3. Since the launch of the 25th Anniversary, our team has been working tirelessly toward honouring the people, programs and partnerships that are moving us closer to a cure for SCI, and a world that is healthy and inclusive. p.5
    What are these programs and partnerships?

    4. With a focus on creating accessible communities and furthering SCI research for a cure, the four-day conference and exposition will be held in Vancouver and will host an estimated 3,000 delegates from around the world. p.13
    Sounds like an expensive conference. Outcomes regarding ‘furthering SCI research for a cure’ will be interesting.

    5. The Foundation has made a significant impact on thousands of people—achieving great progress in interdisciplinary approaches to improve lives and find a cure for SCI, p33
    What is this great progress in finding a cure?


    6. The first and only Canadian database to collect and share standardized SCI data, the Registry supports on-going research and clinical trials that accelerate the discovery of a cure. p.34
    Which on-going research and which clinical trials?

    7. From day one, we’ve been involved in finding a cure for spinal cord injuries and in encouraging others to enjoy healthy lifestyles. p.39
    I remember there was a bit of confusion regarding whether or not cure had been an original aim of the foundation. I guess this settles it.

    8. We will seek ways to accelerate the search for a cure through the global expansion of innovations and networks such as the Rick Hansen Institute, ICORD and the Blusson Spinal Cord Centre. p.40
    Global expansion? Oh no! A worldwide network of institutions that purport to be cure driven but are in fact not. That’s exactly what we need.

    9. As well, we will host Interdependence 2012 (i2012), a global conference that will attract 3,000 delegates to advance accessibility and inclusivity around the world, and to build collaborations to find a cure for SCI. p.40
    It’s as though they think that tagging ‘find a cure’ on the end of a sentence is somehow sufficient. Also, ‘i2012’? Really? I wonder how much the person who came up with this idea got paid.

    The whole document seems a bit 'fluffy'. I'd be interested in the opinion of others.

  5. #5
    This is plain old bullshit artistry 101! Stick a few fancy words like "synergy", "collaboration", "global", "programs" and "partnerships" in a sentence and your eyes glaze over.

    This Organisation is nothing more than an epic publicity stunt.

  6. #6
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    I wonder what all their millions could have done in the hands of the real science, bearing in mind the amount of clinical trials completely stuck "only" for lack of funding. They could have fund all Wise trials, Neurogel, Stephen Davies and whatnot SEVERAL times.

    That's fucking sad if you think about it.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

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  7. #7
    Quote Originally Posted by Ruth P View Post
    Thanks for posting Dennis. An 'interesting' read. Below are the aforementioned nine uses of the word ‘cure’ in their contexts.

    1. With our partners we have established spinal cord injury (SCI) best practices, shared patient data networks, accessibility awareness, quality of life grants, school programs and grants for researchers collaborating to find a cure. p5
    Which researchers? What type of research?

    2. Funds raised by the Foundation are committed towards various innovations focused on accelerating the search for the cure, and improving the daily lives of people living with SCI. p.5
    More detail about these cure innovations would be useful.


    3. Since the launch of the 25th Anniversary, our team has been working tirelessly toward honouring the people, programs and partnerships that are moving us closer to a cure for SCI, and a world that is healthy and inclusive. p.5
    What are these programs and partnerships?

    4. With a focus on creating accessible communities and furthering SCI research for a cure, the four-day conference and exposition will be held in Vancouver and will host an estimated 3,000 delegates from around the world. p.13
    Sounds like an expensive conference. Outcomes regarding ‘furthering SCI research for a cure’ will be interesting.

    5. The Foundation has made a significant impact on thousands of people—achieving great progress in interdisciplinary approaches to improve lives and find a cure for SCI, p33
    What is this great progress in finding a cure?


    6. The first and only Canadian database to collect and share standardized SCI data, the Registry supports on-going research and clinical trials that accelerate the discovery of a cure. p.34
    Which on-going research and which clinical trials?

    7. From day one, we’ve been involved in finding a cure for spinal cord injuries and in encouraging others to enjoy healthy lifestyles. p.39
    I remember there was a bit of confusion regarding whether or not cure had been an original aim of the foundation. I guess this settles it.

    8. We will seek ways to accelerate the search for a cure through the global expansion of innovations and networks such as the Rick Hansen Institute, ICORD and the Blusson Spinal Cord Centre. p.40
    Global expansion? Oh no! A worldwide network of institutions that purport to be cure driven but are in fact not. That’s exactly what we need.

    9. As well, we will host Interdependence 2012 (i2012), a global conference that will attract 3,000 delegates to advance accessibility and inclusivity around the world, and to build collaborations to find a cure for SCI. p.40
    It’s as though they think that tagging ‘find a cure’ on the end of a sentence is somehow sufficient. Also, ‘i2012’? Really? I wonder how much the person who came up with this idea got paid.

    The whole document seems a bit 'fluffy'. I'd be interested in the opinion of others.
    Great picture Ruth!

    I wonder how longer will this go on?

    If that was happening in Italy I would probably be able to stop it.

    In this case it is up to some brave Canadians to do most of the work I think, but I will for sure help as I can.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  8. #8
    I think that the only thing that could stop the joke of RIH in some way is the results of trials/research (Wise, Vaquero, Davies, Geron, ...). And even then, I believe they will find the way to steal some merit to stay in the business.
    Sadly they have a lot of blind fans.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

  9. #9
    Ruth,
    Great post! These are questions that we got to ask.
    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. #10
    It's not what you say, it's what you do. It is pretty clear that RHF does not do 'cure' in any meaningful way.

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