Become a Tinnitus Talk Advocate

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Jan 10, 2015.

    1. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I can do awareness since none of my professional skills are really relevant:)
       
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    2. Steve
      Creative

      Steve Director Staff Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Excellent.

      We'll get the teams set up later today (later UK time that is).

      We'll start a message to show you the teams forum, Markku will set it up and we can go through what we have and start throwing some ideas around.

      Thank you to everyone who's come forward so far.
       
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    3. meeruf
      Badass

      meeruf Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Diving
      I would love to be on the Team Awereness. I'm decent in most editing software. Photoshop, Sony Vegas, Premier Pro, Lightroom etc. I have a Canon 7D and two GoPro's. I could help out in making awerness videos. I even have some ideas.
       
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    4. Venryx

      Venryx Member

      Location:
      Seattle, WA
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      lucid dream technique
      I'll be glad to help with what I can in coding and website setup.

      I don't have a professional background, as I taught myself coding a few years back, and have used it since only on personal and open-source projects.

      I'm most used to coding in C# and JavaScript, but I've also done some in Java, Python, and PHP (worst language ever; but it's kind of standardized on, unfortunately).

      "We'll start a message to show you the teams forum, Markku will set it up and we can go through what we have and start throwing some ideas around."

      Where is this? Or is it still in the works?
       
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    5. Viktor Salvatore
      Smug

      Viktor Salvatore Member

      Location:
      Las Vegas, Nevada
      Tinnitus Since:
      7-5-11
      Markku... Where is this thread going? Lots of volunteers but no conclusion as to any outcome?
       
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    6. attheedgeofscience
      No Mood

      attheedgeofscience Member Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      As for my involvement with Team Awareness, here is my own contribution:
      • Testimonial provided from Mr. Rob Gerk (first man ever to be treated with a cochlear-gene therapy aimed at restoring hair cells in the inner ear. [The feedback can be seen elsewhere on this site]
      • Q&A-session with the CEO of Auris Medical (currently on-going at the moment; see alert that was sent to you Friday, last week). [This is obviously a unique opportunity]
      • Feedback expected from Otonomy on their drug candidate OTO-311 which has seen a bit of confusion on this site. I contacted the CEO and was given a temporary response from the company that oversees its PR. I expect to have a final response "anytime now" in relation to when the trial will start, inclusion criteria, whether it will be phase-I or phase-II, etc.
      • Coordinating daily tweets.
      • Statistics ("Satisfaction Survey" and "Mini-Survey") which have been published on TinnitusTalk for TT-members own info.
      • Communication with relevant entities for future exposure (e.g. the ATA, celebrities).
      As for Team Awareness, here is what the entire team has achieved so far:
      • Relationships have been established with a team of researchers in the US, the Tinnitus Research Initiative (TRI), certain people affiliated with the TINNET programme, and an otology-professor with the US Dept of Defense.
      • An editorial will be published for the pharmacologial journal "Expert Opinion on Pharmacotherapy" using the informal study data of Trobalt as a basis for the article. We are expecting the drafted version of the editorial "any minute" for our review and commentary. Team Trobalt will probably become co-authors.
      • A roadmap for the future has been produced aiming for future cases studies to be published - and a lot of liaising and forming relationships has been going on behind the scenes. Much of the work involves sharing information and contacting the right people with the right message in the right context. A potentially tricky job that involves a variety of skills/traits such as project management, highly specific medical knowledge, excellent communication skills, and perseverance. Take any of those skills out of the equation, and the project fails.
      • +500 discussions/e-mails.
      • "Recruiting" key people to our project (e.g. a former professor of mathematics).
      • The above is just the key topics. At this point, the entire team has probably put in about 400 hours worth of our own non-paid spare time tracking down survey software, corresponding with researchers, producing action logs, designing input specifiations for future data collection, obtaining legal advice, and many other things.
      So actually a number of things are taking place. I specifically highlighted both my own and also the group contributions to give a sense that anyone can take part in this and make a difference. But as with anything in life, it requires a certain commitment from those wishing to join - a commitment which has not been visible in all cases from those who decided to sign-up. In my opinion, a key success factor (to any project) is getting hold of the people with the right skillset(s). A lot can be accomplished when the right people get together and put their mind to it. So far, Team Trobalt is an example of just that.

      attheedgeofscience
      28/JAN/2015.
       
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    7. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Bravo to @attheedgeofscience and Tinnitus Talk Teams for their many accomplishments. You guys really are rolling!

      I have not joined a team because I know I don't have time right now to contribute in a way that's helpful. But I can cheer on those who can and do.
       
    8. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      That reminds me, I still plan to review those Google docs, @Steve -- just have not gotten to them yet. Oh and I enjoyed your music on Spotify the other day at work!

      Go Team Research!
       
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    9. RaZaH
      Dancing

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Sorry for being so inactive, been very busy, working on setting up my little vintage synth repair shop and studio.
       
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    10. MichaelCast
      Amazed

      MichaelCast Member Benefactor

      Tinnitus Since:
      10/2008
      Cause of Tinnitus:
      Probably Toxic drugs/Flu
      I would love to be involved in Team Awareness. Tell me what to do!
       
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    11. Kaelon
      Wishful

      Kaelon Member Benefactor

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      Hello!

      Please count me in for "Team Awareness," "Team Tech," and "Team Research."

      1. Team Awareness
        I come from a deep digital strategy and advocacy background, and am happy to assist and support communications and marketing campaigns and efforts to increase awareness, alignment, and adoption around Tinnitus.

      2. Team Tech
        A project management professional in my career, I work at a leading digital agency that specializes in strategy, creative design, user experience, technical development, and implementation of solutions. My personal hobbies and interest center on LAMP and LEMP-based stacks for dynamic, community-driven websites, and I'd be very happy to provide ongoing insight and support to the Tinnitus Talk community as appropriate.

      3. Team Research
        For the past five months, I've been conducting extensive research on the etiology and pathological progression of Tinnitus, and have compiled an exhaustive array of bookmarks and references, many of which I post about here on Tinnitus Talk. I eagerly try new supplements and attempt new protocols and report back after early testing, and would be happy to continue contributing in this way.
      Thanks!
       
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    12. Grant1

      Grant1 Member

      You bring some unique skills to the community on this forum.

      We are lucky to have you.

      I don't visit here as often as I once did so I was not aware of some of your posts, but will check them out.
       
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    13. Silvio Sabo
      Pooptoast

      Silvio Sabo Member Benefactor

      Location:
      Gothenburg, Sweden
      Tinnitus Since:
      05/2006
      Cause of Tinnitus:
      Noise - I think
      I have a bachelor degree in molecular biology. Right now I'm studying computer science so whatever I can do please let me know.
       
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    14. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      I invite all of you to join Team Awareness. Right now we are busy with cultivating ideas for content on our Twitter and Facebook pages. The more "active" we are on those platforms, the more likely it is that we can do our part to build awareness about Tinnitus. I agree that awareness of Tinnitus is very low in general society (heck, I didn't even know Tinnitus was something that could happen to people until it happened to me!) In that regard I am grateful that I had a "flirtation" with really intrusive, severe tinnitus before mine settled down to a somewhat mild form--it gives me the motivation to get to work.

      And all in all, in thinking about getting awareness of Tinnitus raised, I think of a quote my cross country coach pounded into our team when I was in high school:

      "If not now, when? If not us, who?"
       
    15. Joshua

      Joshua Member

      Location:
      Washington, DC
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Who knows?
      I can help on Team Awareness. I have an advocacy background.
       
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    16. derpytia
      Pooptoast

      derpytia Member Benefactor

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      Hi, I'd like to be a part of Team Awareness if it isn't too late. My professor wants to help me get a professional journal published for our department and our archives so that they'll be available for other college across the states about tinnitus and hearing protection for students (especially music students) and how teachers can help protect their students' ears...
       
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    17. randomuser

      randomuser Member

      Tinnitus Since:
      05/2013
      I'm a humble researcher, regenerative medicine and microbiology, probably useless here. I usually read tens of research papers per week, so if it useful, let me know.
       
    18. lvts
      Dreaming

      lvts Member Benefactor

      Tinnitus Since:
      4/2015
      I am a software engineer and can help with any possible initiatives. I recently gathered that OptumLabs (division in united health group) is opening up millions of their claims/clinical de-identified information for research purposes.

      https://www.optum.com/optumlabs/partners.html

      Hopefully this data might help us with any further initiatives.
       
    19. The Red Viper
      Curious

      The Red Viper Member

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Neck injury (Tendonitis @ trap/SCM junction)
      I'm an engineer (studied biomed and aerospace). Currently studying law (taking the bar soon) and have a decent knowledge of patent law. I also did a brief stint in IT and cyber security.
       
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    20. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      I would like to join Team Awareness. I believe this is key for putting tinnitus up there with other conditions, once people know the implications they will be more likely to respond to fund raising efforts.
       
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    21. Brifa

      Brifa Member Benefactor

      Location:
      Buenos Aires, Argentina
      Tinnitus Since:
      08/2016
      Cause of Tinnitus:
      Loud Noise
      Hi everyone!

      @Markku and @Steve , I will like to be part of the Team Awareness. I'm really proactive and have activist experience (NGO-social movements related). Most important of all, I speak several languages. My first language is Spanish, but I also speak English and French. Although I'm not able to spoke them, I can also read in Portuguese and Italian.

      I think that those skills could help to translate information from english to spanish or from spanish/italian/french/portuguese to english and, therefore, to spread our campaigns in non anglophone countries.

      I hope this could help, I really want to contribute :)

      Best regards: Brifa.
       
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    22. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      If we get any campaigns going every now and then for Tinnitus Awareness and if you would like to offer your help, please leave your name in this thread.

      Love glynis
       
    23. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @glynis:

      I've been able to talk to a few tinnitus researchers in the USA. They say that're working long hours to find a way to bring the ringing down. One pointed out that there's many researchers in England, Sweden, Finland, Germany and Australia who are working privately and under paid. More funds are needed. One said that the focus is now turning to re-wire the brain and that many researchers are studying the frontal lobe as other researchers are studying the frontal lobe for dementia and epilepsy.
       
    24. ABakos
      Wishful

      ABakos Member Benefactor

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ? neck injury/unknown
      I could help with Team Awareness. I am a Public Health Nurse and am tired of having the medical community in Manitoba so ignorant to Tinnitus.
       
    25. Grey Dawn
      Assassinator

      Grey Dawn Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Acoustic Trauma
      I'm a professor of communication, with expertise in scientific communication, broadly conceived, in the public sphere. I have critically analyzed and produced publications on health campaigns, public debates about mental health, the role of stigma in culture, networks of larger organizations (esp. those involving scientists), and the impacts of technology on society and the individual. I have a good critical eye and can give some perspective about where to aim our limited arrows.
       
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    26. cspc
      Studious

      cspc Member

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Acoustic Trauma
      Web Developer / Software Developer / Machine Learning Engineer / Data Scientist - Computer Science.
       
    27. The Frenchie
      Insomnious

      The Frenchie Member

      Location:
      Quebec, Canada
      Tinnitus Since:
      2013, worsened 2018
      Cause of Tinnitus:
      Noise induced / Maybe ETD
      Interesting. You people have a big heart. I might join you soon. :huganimation:
       
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    28. Finnigan
      Stressed

      Finnigan Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Injury maybe
      XF pro. If you need any help.
      Political lobbying as well.
      Such a much needed forum and I would like to donate $ as well.
       
    29. Finnigan
      Stressed

      Finnigan Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Injury maybe
      Hi Hazel,

      Would like to reply to conversation but your permissions are way too tight as there is no reply functionality for new members. XF has permission scales to fix this:) Also your pop up during registration is blocking and erasing form data input. Just a friendly FYI :)
       

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