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Thread: How to influence (our) foundations?

  1. #11
    Real care is cure - They should know this by now..
    "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.

  2. #12
    I'm not out of the rehab hospital yet, but it's time to start back with some cure activity. Let's face it, it will getting me walking more than rehab will.

    I think that we have to decide on our task.

    Is it just to get the foundations and others to respond?

    Or is it to build a force strong enough that they have to respond because we are the ones who comment on everything and we have the ability to get our concerns out to the larger media.

    I think that if we go for the first option, the foundations (and their many many supporters) will always just call us the noisy minority and will accuse us of being maladjusted to paralysis and the refrain will always be the same, "if you don't like it, start your own foundation."

    Therefore, not only do I think that option two is the best option, I also think that it's the option, for better or worse, that we're left with.

    Before I go on I just want to state that there are already a lot of people doing stuff as individuals and this is good. We also have a lot of people meeting with the scientists, organizing symposiums, talking to people with money, etc. and that work is fundamental, but the vast majority of us aren't and can't. So what do we do with the vast majority who aren't and can't either because of skill, or distance, or mobility issues, or time, or...?

    So how can we who believe in a cure become an effective force? In my opinion we need to be able to comment effectively on everything and anything to do with a cure for spinal cord injury. A foundation is pissing away money, we respond. A new source of cells shows efficacy in animal models, we need to comment and ask what they plan to do past this. A new law to promote research comes to light, we need to put our opinion out there. The more we do, the more people will respond to our call.

    I think that the vast majority will do some things as long as we organize them/ourselves to do it, and to do it regularly.

    Social media is a very good avenue for many of us, but I think we often believe that social media is the answer as opposed to a tool. I know that I have often made this mistake. In our case we are not like those striving for democracy in Egypt, we are a minority, but a minority with people around us who would love to see us walk again. For example, if I put out a message to send an email to support a law, and others just put up a link in their facebook, people will just think that they are supporting me and my efforts as opposed to your efforts to walk again. Your friends don't know me, they only know you, so somehow it needs to be personalized to let your friends know that they are supporting YOU. This is just an example.

    So other than me just go on, as I truly am an amateur at this, I'd like to hear your ideas and I'll throw out a few concrete ideas on what I think is necessary.

    1. We need a very small board of four or five people to be in constant search of things to support or to demand answers from.

    2. The campaigns need to be regular so people get used to clicking/liking/sharing our stuff.

    3. We need a larger group of what I would call 'picket captains' who are dedicated to making sure the people around them are responding.

    4. We need to make sure that the larger media is always aware of our message.

    I'd love to hear more ideas and I would love to hear others saying that they would give five to ten hours a week to this.

    Like I said, there are many things that we can all do to move this along, this is just one way for the vast majority of us to participate.

    Anyhow, these are just my own convulted thoughts while the nurse takes my blood pressure.

    PS. Just so you can get an idea of what I'm talking about in reality, have a look at www.labourstart.org.
    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

  3. #13

    Lightbulb Cure for Paralysis Campaign

    Can we get something started to focus on big private medical insurance oganizations?
    I can show many out of pocket bills being sent to Medicaid everytime I take our daughter to
    emergency room because medical insurance needs to chance their procedure of physical therapy. This should keep a lot of disabled people out of emergency rooms if healthcare would focus on a cure for paralysis. I'm not sure if anyone read the letter the CRF mass emailed in October on how a penny saved by doing the most cost saving method helps keep
    healthcare costs down, i.e. proper sitting to prevent pressure sores for anyone using a w/c. There are a lot of things that private insurance could do to keep costs down.
    Quote Originally Posted by StemCells&AtomBombs View Post
    I'm not out of the rehab hospital yet, but it's time to start back with some cure activity. Let's face it, it will getting me walking more than rehab will.

    I think that we have to decide on our task.

    Is it just to get the foundations and others to respond?

    Or is it to build a force strong enough that they have to respond because we are the ones who comment on everything and we have the ability to get our concerns out to the larger media.

    I think that if we go for the first option, the foundations (and their many many supporters) will always just call us the noisy minority and will accuse us of being maladjusted to paralysis and the refrain will always be the same, "if you don't like it, start your own foundation."

    Therefore, not only do I think that option two is the best option, I also think that it's the option, for better or worse, that we're left with.

    Before I go on I just want to state that there are already a lot of people doing stuff as individuals and this is good. We also have a lot of people meeting with the scientists, organizing symposiums, talking to people with money, etc. and that work is fundamental, but the vast majority of us aren't and can't. So what do we do with the vast majority who aren't and can't either because of skill, or distance, or mobility issues, or time, or...?

    So how can we who believe in a cure become an effective force? In my opinion we need to be able to comment effectively on everything and anything to do with a cure for spinal cord injury. A foundation is pissing away money, we respond. A new source of cells shows efficacy in animal models, we need to comment and ask what they plan to do past this. A new law to promote research comes to light, we need to put our opinion out there. The more we do, the more people will respond to our call.

    I think that the vast majority will do some things as long as we organize them/ourselves to do it, and to do it regularly.

    Social media is a very good avenue for many of us, but I think we often believe that social media is the answer as opposed to a tool. I know that I have often made this mistake. In our case we are not like those striving for democracy in Egypt, we are a minority, but a minority with people around us who would love to see us walk again. For example, if I put out a message to send an email to support a law, and others just put up a link in their facebook, people will just think that they are supporting me and my efforts as opposed to your efforts to walk again. Your friends don't know me, they only know you, so somehow it needs to be personalized to let your friends know that they are supporting YOU. This is just an example.

    So other than me just go on, as I truly am an amateur at this, I'd like to hear your ideas and I'll throw out a few concrete ideas on what I think is necessary.

    1. We need a very small board of four or five people to be in constant search of things to support or to demand answers from.

    2. The campaigns need to be regular so people get used to clicking/liking/sharing our stuff.

    3. We need a larger group of what I would call 'picket captains' who are dedicated to making sure the people around them are responding.

    4. We need to make sure that the larger media is always aware of our message.

    I'd love to hear more ideas and I would love to hear others saying that they would give five to ten hours a week to this.

    Like I said, there are many things that we can all do to move this along, this is just one way for the vast majority of us to participate.

    Anyhow, these are just my own convulted thoughts while the nurse takes my blood pressure.

    PS. Just so you can get an idea of what I'm talking about in reality, have a look at www.labourstart.org.
    Aggie Mom 2007

  4. #14
    Quote Originally Posted by 0xSquidy View Post
    Team up with more people, learn about marketing, know what you want to tell who, be creative.
    This.

    ...but a leader who has influence is also needed.

  5. #15
    Quote Originally Posted by -scott- View Post
    This.

    ...but a leader who has influence is also needed.
    Yes, that would be nice, but leaders who have influence are either made or if you're thinking of a famous spokesperson, are attracted to something that is organized. They won't just offer to help us on CareCure
    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

  6. #16
    Quote Originally Posted by StemCells&AtomBombs View Post
    Yes, that would be nice, but leaders who have influence are either made or if you're thinking of a famous spokesperson, are attracted to something that is organized. They won't just offer to help us on CareCure
    Ask yourself: what would it take to convince people to get behind someone who has zero recognition but steps to the plate with a solid plan of action?

    That's what is needed. People (including myself) need to be sold on something.

  7. #17

    Lightbulb Costs of SCI

    Quote Originally Posted by -scott- View Post
    Ask yourself: what would it take to convince people to get behind someone who has zero recognition but steps to the plate with a solid plan of action?

    That's what is needed. People (including myself) need to be sold on something.
    Mass email to all state and other country officials. I found these statistics at CRF site:

    The Costs of Living with SCI
    Updated 2011

    According to The University of Alabama National Spinal Cord Injury Statistical Center and the Centers for Disease Control and Prevention, the costs of living with SCI can be considerable, and vary greatly due to the severity of injury.
    Neurologic level and extent of lesion: Persons with tetraplegia have sustained injuries to one of the eight cervical segments of the spinal cord; those with paraplegia have lesions in the thoracic, lumbar, or sacral regions of the spinal cord. Since 2005, the most frequent neurologic category at discharge of persons reported to the database is incomplete tetraplegia (39.5%), followed by complete paraplegia (22.1%), incomplete paraplegia (21.7%) and complete tetraplegia (16.3%). Less than 1% of persons experienced complete neurologic recovery by hospital discharge. Over the last 15 years, the percentage of persons with incomplete tetraplegia has increased while complete paraplegia and complete tetraplegia have decreased slightly.
    Average Yearly Expenses
    Severity of Injury First Year Each Subsequent Year
    High Tetraplegia (C1-C4) $985,774 $171,183
    Low Tetraplegia (C5-C8) $712,308 $105,013
    Paraplegia $480,431 $63,643
    Incomplete motor function at any level $321,720 $39,077

    12 days: length of initial hospitalization following injury in acute care units.

    37 days: average stay in rehabilitation unit.

    89.8: percentage of all spinal cord injured individuals discharged from hospitals to private homes.

    6.2: percentage who are discharged to nursing homes.

    Estimated Lifetime Costs by Age of Injury
    Severity of Injury
    25 Years Old 50 Years Old
    High Tetraplegia (C1-C4) $4,373,912 $2,403,828
    Low Tetraplegia (C5-C8) $3,195,853 $1,965,735
    Paraplegia $2,138,824 $1,403,646
    Incomplete motor function at any level $1,4561,255 $1,031,394
    By developing therapies for those who are already spinal cord injured and preventing new injuries, the United States would save as much as $400 billion on future direct and indirect lifetime costs.
    Source: National Spinal Cord Injury Statistical Center (NSCISC) located at The UAB Department of Physical Medicine and Rehabilitation, Centers for Disease Control and Prevention
    Aggie Mom 2007

  8. #18
    No disagreement there, but presenting cost-benefit stats hasn't gotten very far. It's not enough.

  9. #19
    Quote Originally Posted by -scott- View Post
    No disagreement there, but presenting cost-benefit stats hasn't gotten very far. It's not enough.
    Yep, you have also to bring up evidence that a cure is really possible.
    It would be great if.. let's say ten well known SCI researcher would agree that it is possible to cure chronic SCI not too far in the future.

    They could become the scientific voice of the community and indicate a road map to a cure. Then the community could come together and rise a little hell to make it happen..

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

  10. #20
    That's the frustrating thing - a cure is possible - ten well known researchers may not have the time to do such a thing

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