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Thread: Cheer me up

  1. #41
    Quote Originally Posted by GRAMMY View Post
    Most scientists working in the field get no emails asking questions about their lab work and publications or receive words of encouragement, extra funding or see the faces of people connected to SCI at conferences or in their labs. The silence is deafening.
    Do you think this is what is stopping them take their work further? If so do you have recommendations on how to fix it?

  2. #42
    Quote Originally Posted by niallel View Post
    Do you think this is what is stopping them take their work further? If so do you have recommendations on how to fix it?
    Obviously the scientists Tomsonite mentioned that have been cultivated and have relationships to the community have taken their work and efforts further than the vast majority that have not been from the academia realm. Their students are also learning there are people waiting on this important work to bring therapies about. They're instrumental in getting the word out that it's about people, not projects. They're the ones that have seen people, not posts.
    Last edited by GRAMMY; 04-11-2018 at 03:10 PM.

  3. #43
    Quote Originally Posted by GRAMMY View Post
    They're the ones that have seen people, not posts.
    I'm not sure what this means?

  4. #44
    Quote Originally Posted by niallel View Post
    I'm not sure what this means?
    It means probably 99.99% of the people working in the SCI field have never heard of you or read what you've posted.

  5. #45
    Quote Originally Posted by GRAMMY View Post
    It means probably 99.99% of the people working in the SCI field have never heard of you or read what you've posted.
    I'm still unsure of what you are trying to say. Please don't be cryptic, just say what you think.

  6. #46
    Quote Originally Posted by niallel View Post
    Do you think this is what is stopping them take their work further? If so do you have recommendations on how to fix it?

    I'm still unsure of what you are trying to say. Please don't be cryptic, just say what you think.
    I think Grammy is trying to say the vast majority of students and scientists working on SCI have no connection to the community. They never post or read on carecure. They never go to conferences where they meet people with SCI. They don't belong to any SCI groups on social media. And as Grammy said, the majority of people in the SCI community never reach out to them in any capacity.

    Because they have no relationship with the actual SCI community, and because of the bureaucratic burdens placed on academic researchers, they never think about SCI as an all-encompassing, HUMAN problem that must be solved. They only ever think about one aspect of SCI as a scientific conundrum that must be solved. This is why you see so many researchers laser-focused on only walking, or only grasping, or only breathing, only spasticity, or whatever. They don't see SCI as a problem that affects one's entire life - individual aspects are just puzzles that haven't been solved yet.

    To give you an example, a researcher visited my university and gave us a talk about the use of robotics in SCI rehabilitation - the pros and cons, where robotics has been, where it should go, and what he's working on. After his talk, many fellow students and I got to ask him questions about his journey up the ranks in the research world. One of my colleagues asked if SCI was his chief interest and focus - i.e., if SCI was what motivated him to be a scientist. His response, more or less, was:

    "No, I just like science. I don't care what I work on. I'd do genetics in fruit flies if they made me. I just like science".

    As I alluded to in a previous post, I don't even fault this researcher for having this mindset. Again, students are pushed in to PhD programs by their professors because they have good grades or seem like curious individuals. Thus, many students end up in a PhD program with no real purpose or motivation, other than someone told them they should pursue a PhD and/or they're just curious about science for the sake of curiosity. Additionally, these are the people with no connection to SCI, and may go through their entire scientific careers never having formed a real connection with someone actually from the SCI community (by that I mean people with SCI or a direct family member).

    So how do we fix this? I'm not sure we can expect scientists who have been working on SCI for 10, 20, 30 years, and never seen it as more than a scientific problem, to suddenly "see the light" and care enough to start focusing on taking curative therapies to market - most of them would literally be risking the stability of their jobs if they did. What is key is having students - PhD students or even undergrads in neuroscience programs - making an actual connection to the community. Meet face-to-face with the community at conferences or other events. Have members of the community visit their mentor's labs. Sit and talk about what research priorities of the scientific community vs. SCI community are. Get young scientists to understand they can play a bigger role in real people's lives if they think about SCI as more than just some narrow-focused project their mentor told them to work on.

  7. #47

  8. #48
    Quote Originally Posted by tomsonite View Post
    I think Grammy is trying to say the vast majority of students and scientists working on SCI have no connection to the community. They never post or read on carecure. They never go to conferences where they meet people with SCI. They don't belong to any SCI groups on social media. And as Grammy said, the majority of people in the SCI community never reach out to them in any capacity.

    Because they have no relationship with the actual SCI community, and because of the bureaucratic burdens placed on academic researchers, they never think about SCI as an all-encompassing, HUMAN problem that must be solved. They only ever think about one aspect of SCI as a scientific conundrum that must be solved. This is why you see so many researchers laser-focused on only walking, or only grasping, or only breathing, only spasticity, or whatever. They don't see SCI as a problem that affects one's entire life - individual aspects are just puzzles that haven't been solved yet.

    To give you an example, a researcher visited my university and gave us a talk about the use of robotics in SCI rehabilitation - the pros and cons, where robotics has been, where it should go, and what he's working on. After his talk, many fellow students and I got to ask him questions about his journey up the ranks in the research world. One of my colleagues asked if SCI was his chief interest and focus - i.e., if SCI was what motivated him to be a scientist. His response, more or less, was:

    "No, I just like science. I don't care what I work on. I'd do genetics in fruit flies if they made me. I just like science".

    As I alluded to in a previous post, I don't even fault this researcher for having this mindset. Again, students are pushed in to PhD programs by their professors because they have good grades or seem like curious individuals. Thus, many students end up in a PhD program with no real purpose or motivation, other than someone told them they should pursue a PhD and/or they're just curious about science for the sake of curiosity. Additionally, these are the people with no connection to SCI, and may go through their entire scientific careers never having formed a real connection with someone actually from the SCI community (by that I mean people with SCI or a direct family member).

    So how do we fix this? I'm not sure we can expect scientists who have been working on SCI for 10, 20, 30 years, and never seen it as more than a scientific problem, to suddenly "see the light" and care enough to start focusing on taking curative therapies to market - most of them would literally be risking the stability of their jobs if they did. What is key is having students - PhD students or even undergrads in neuroscience programs - making an actual connection to the community. Meet face-to-face with the community at conferences or other events. Have members of the community visit their mentor's labs. Sit and talk about what research priorities of the scientific community vs. SCI community are. Get young scientists to understand they can play a bigger role in real people's lives if they think about SCI as more than just some narrow-focused project their mentor told them to work on.
    Your explanation is spot on. I'd once made comments on a scientific paper I'd read. The researcher saw my comments and replied back requesting my email address so we could further discuss his paper and goals in private. After much back and forth, I was invited to his lab for a visit. It was the biggest education I could have gotten without paying tuition. But it cut both ways. I met every student working in the lab all assigned to different projects. They wanted to know why I was there and I was more than happy to explain it all to them. Every person working in that lab now knows what I'm waiting for and what I want. It's not a project, it's about people.

    I attended a conference with over 300 scientists and their students all working in neuro-regeneration. I was the only SCI advocate there with the exception of one person in a wheelchair. I worked the poster presentations and reviewed every one of them. It's interesting to listen to the students defend their posters (experiment results). It was a chance to connect. At one poster, from a very well known SCI lab, I was perhaps a bit critical of the model they were using and the final goal statement was weak. Two students from other universities were close by and listening in. They were also from prestigious university labs and came to the aid of their fellow student to help defend the poster. The conversation and poster review turned into a group discussion with 3 universities and myself. All 3 of these young students were enlightened to the fact that their lab projects should be about people. I asked them what they were most concerned about. The overall concern was funding in their future labs. I explained a few alternatives for them. In essence, make your project about translating a therapy to help people in wheelchairs and I'll work on helping you get supplemental funds. The light came on. It's a true fact. Get young scientists to understand they can play a bigger role in real people's lives if they think about SCI as more than just some narrow-focused project their mentor told them to work on.​

  9. #49
    Thanks to both of you for the detailed explanations.

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