Let's Increase Tinnitus Research Funding in the US — Our Input for NIDCD's Strategic Plan

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Mar 7, 2020.

    1. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
      Thanks for that list, Brightside. That's very encouraging. Hadn't really believed the chemistry route could be the way to go but it looks like I stand corrected. It should certainly help at any rate. I like the look of the FX-322 drug and will look into it later.

      Thanks also for the heads-up on Lenire. I didn't realize there was a waiting list. I'll jump on that now. I was going to Europe for 2 months Apr/May before C19 started but will now be targeting for the Fall.
       
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    2. aot
      Artistic

      aot Member

      Location:
      USA
      Tinnitus Since:
      2016. Worsened 11/2019
      Cause of Tinnitus:
      Probably sound induced.
      Just so you know, some people have had really had bad spikes from using Lenire, though they seem to be temporary. People with moderate tinnitus and/or hyperacusis seems to respond best from what I understand.
       
    3. arcanesystem
      Pensive

      arcanesystem Member Benefactor

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown
      Done.
       
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    4. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Great first post Stiliyan!! Thank you!

      Thank you, Arcanesystem!

      Love it when new members step up and help right away!

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    5. Sevv

      Sevv Member Benefactor

      Tinnitus Since:
      12.04.2019
      Cause of Tinnitus:
      Loud concert
      Done.

      I tried emphasizing a bit the economic part of tinnitus and hearing loss, figures I've found are $25 billion and $100 billion annually. And that is just the US, so it is mindboggling that no countries are investing heavily into this. I mean even if you have no empathy, there is still a shitload of money to be made. Isn't that an incentive?
       
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    6. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Thank you, Sevv.


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    7. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      stock-vector-tell-them-what-you-want-typography-poster-362599706.jpg
       
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    8. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      A big THANK YOU to everyone for sending their responses into NIDCD.

      If you haven't responded, there's still time. The deadline is March 31, 2020.

      If you would like to receive updates from the NIDCD, including updates on the NIDCD Strategic Plan, please visit their public website at www.NIDCD.nih.gov and sign up to receive Email Updates on the homepage. I signed up and was also given the choice to receive notices from other agencies, like the Veterans Administration, as well.

      If you have a question for NIDCD, you can email them at nidcdinfo@nidcd.nih.gov.

      Thanks again, TC
       
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    9. jimH
      Caffeine

      jimH Member Benefactor

      Tinnitus Since:
      30 years+
      Cause of Tinnitus:
      Acoustic trauma

      Done!


      A big :thankyousign: and "Well Done!"

      Great job, guys!....(y)
       
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    10. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
      That's how my tinnitus is anyway. Seems to come and go - good and bad - in days or weeks at a time. It's generally a couple of good days followed by a couple of bad, rinse, repeat, ad nauseum. I'm a big believer in bimodal therapy however. It's good for lot's of stuff. Even if it doesn't cure me or permanently lower it - at least right away, and I accept these things may take a good while to happen and you need to help them along - creating new neuroplasticity protects you from memory loss and all other manner of neurological impairment. And tinnitus is definitely a symptom of lost neuroplasticity.

      As I've stated before I think the "cure" may end up being several things people need to do in order to resolve their tinnitus. This, Dr. Shore's thing, FX-322, some CBT training, etc. Having more options and combinations open makes that much more likely.
       
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    11. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
      The Pharmas are starting to finally clue into this. So it's in the better late than never category, but at least stuff is up and coming.
       
    12. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
    13. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      For you to fill out the form and submit it. :LOL::ROFL::wacky:
       
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    14. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      I would really like to help... but I don't know how to answer these questions? Can I just copy some of the example points?
       
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    15. Zugzug

      Zugzug Member

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
      The message that was conveyed earlier in the thread is that a repeat of answers isn't necessarily bad, as it speaks to the power of our coalition. I think lots of copy pasting with minor editing is fine.
       
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    16. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      You absolutely can just copy and paste what is provided. Open the first question by telling your story (how long you’ve had tinnitus, how it has impacted you), mention you’re from tinnitus talk, and you’re all set! Repeat answers show we are an educated and organized patient community :)
       
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    17. Sevv

      Sevv Member Benefactor

      Tinnitus Since:
      12.04.2019
      Cause of Tinnitus:
      Loud concert
      I wrote maybe 4-5 new paragraphs and copied the rest because I am not a native English speaker and don't have time to formulate a scientifical paper on my own in a foreign language (or even do all that research). So I copied most of what has already been written, but added my own story and some extra thoughts (especially considering the economical aspect).
       
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    18. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      That's what I have done. I submitted my answers now.
       
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    19. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      Deadline is tomorrow! Please take a moment to copy and paste the amazing answers provided and let the NIH know what tinnitus sufferers want and need!
       
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    20. Watasha
      No Mood

      Watasha Member Benefactor Advocate

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Done!
       
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    21. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Waited for the last minute. Didn't you?:LOL:

      Deadline to submit your answers is tomorrow!!!!

      March 31, 2020!!
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    22. Watasha
      No Mood

      Watasha Member Benefactor Advocate

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Haha, yes! I also let Dr. Rauschecker's team know about it as well and I also informed them of the BTA's grant program that has understanding animal models in humans a main point.
       
    23. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Today is your last chance to submit your answers!!!!!!!

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