Tinnitus Research Initiative (TRI) 2019 Conference

Discussion in 'Research News' started by Markku, Mar 12, 2019.

    1. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      @Hazel

      No worries. Please care for your mother. This is much more important at the moment.

      The rest can wait.

      Take care.
       
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    2. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
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    3. dayma
      Inactive

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
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    4. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      Whoa, was looking forward to this :) Thanks! Will check it out for sure.
       
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    5. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Hazel you are a true professional!!

      Excellent recap.

      I often look up facts for Matteo de Nora wondering who he is and thank him for donating twenty million for the creation of TRI.

      From your blog:

      "The TRI was founded with money donated by philanthropist Matteo de Nora"
       
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    6. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      Love this Hazel, thank you very much, you are a star :) As always you come through with the goods and look forward to the interviews as well.
       
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    7. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      He's a bit of an enigma! We'll try to get him on our podcast :)
       
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    8. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Wow! That would be amazing.
       
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    9. Manny
      Dead

      Manny Member Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
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    10. GSC
      Owned

      GSC Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Acoustic trauma.
      Loved your blog post. Interesting to note that there's hardly any investors there.
       
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    11. Alberte

      Alberte Member

      Location:
      Canada
      Tinnitus Since:
      4 years
      Cause of Tinnitus:
      Unknown
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    12. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      A cure is realistic over the next few decades! I hope it comes sooner than that, but I can’t see it coming in 5 years. I think what the high bet people are relying on are the regenerative therapies from Otonomy, Frequency Therapeutics, Decibel Therapeutics. And as some of you know tinnitus is incredibly heterogeneous that originates in different parts of the brain and there's no known exact mechanism for subjective tinnitus, only theories (so far).

      It’s also possible that the regeneration therapies won’t work so we may never know if it would wipe tinnitus out.

      IMO I don’t think they will find a cure until they find the exact mechanism of tinnitus, and then it will further complicate things if it's still different for each sub-group or just individuals in general. And even if and when that’s discovered, it will be another decade before a drug is developed to fix that mechanism.

      As for the investor part, I don’t blame anybody wanting to steer clear from a tinnitus cure. If you had money to invest, there are much better/safer ways. There is high risk and unacceptable risk and so far, I would put tinnitus cures in an unacceptable risk category.

      If only the millions of tinnitus sufferers donated to research regularly it would be a game changer, but many of them like to rely on "can’t somebody else do it."

      Now for some positivity, I think treatments will continue to grow over the years (not cures) whether it be through bimodal neuromodulation or improved technologies that will help to divert awareness away from the condition.
       
    13. EDDTEKK

      EDDTEKK Member

      Location:
      Europe
      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Noise Exposure
      It is so sad to see how little research is funded and actually ongoing. Of course, there are more papers than 10-20 years ago but it is not always the quantity which makes the difference. As long they can't measure and see tinnitus objectively, there will be no understanding of it. Any potential success will be a coincidence.

      The current existing physicians, whatever special field they come from, and the current technical equipment and technologies will not detect the underlying mechanism of tinnitus.

      Perhaps in 30 years there will be new medical fields with new denomination of physicians with new technologies. Then... they might better understand this complex sensation.

      I even highly doubt that current regenerative research will help us tinnitus sufferers. This will not work - it sounds too easy.

      There should be more Matteo de Noras in the world, who can advance the development and understanding of tinnitus.

      So many very rich people like entrepreneurs, musicians, actors or politicians are on the same boat I assume.

      Why nobody of these men and women supports the TRI or another medical company?

      How can we excite, even find, these people to help fund and donate money for a good purpose? Facebook - Instagram - Twitter - YouTube - LinkedIn - ...?

      We have to create some campaigns to find more Matteo de Noras.

      I just read the article written by @Hazel on the Tinnitus Hub blog, where it stated that Matteo de Nora donated around 20 million dollars. Sounds quite a lot, but even this figure seems much too little unfortunately.
       
    14. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
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    15. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      I remember back in the day when Matteo de Nora donated the twenty million euros to establish the TRI organization.

      Here in the USA I remember remarks made by support board "experts" once involved with the ATA. Instead of being excited about this new organization critical remarks were made. I don't remember now. This was before Tinnitus Hub. And it hurt my soul.
       
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    16. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @Hazel

      Were you or the Ph.D. students able to catch up/listen to Dr. Rauschecker's presentation?
       
      • Good Question Good Question x 2
    17. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      I wasn't there personally, I only attended one or two talks, because I was too busy conducting interviews. I so wished I could have cloned myself :D Next year in Vancouver, we plan to be there with a whole team of volunteers!

      I've not had a chance to go through the reports submitted by the ESIT students yet, so I don't know whether they caught his talk or not. These reports will likely form my follow-up blog post, which I hope to pusblish in a week or so.

      We did however conduct a video interview with Dr. Rauschecker, so that one is coming up for sure!
       
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    18. Melody052008

      Melody052008 Member

      Tinnitus Since:
      08/2010
      Thanks for attending the conference Hazel. Your and Markku's work is much appreciated.

      This has been an on-going debilitating pain for me.

      I’ve been suffering from Ménière’s for the last few years, severe vertigo spells and this tinnitus. I got a shunt to help drain fluid, that lasted about 4-6 months. Severe spells came back again at work, just awful. This time had to have another surgery, Vestibular Nerve Section. What a journey.

      Now trying different meds on me, dealing with awful tinnitus, the tones and pitch changes constantly! I had to get hearing aids. I go in and she adjusts them for me, by the time I get home, everything just changes. Maskers don’t really work.

      I love my family and if it wasn’t for them, I don’t know. I had to sell everything I loved, my horses and my Harley. My balance has never been 100% since surgery and of course I had to do what was best for my horses and for me.

      I always pray researchers figure it out but all I hear is, they just don’t know what causes it.

      I sleep at night and sometimes it flares up!! Omgosh!! There is nothing to stop it! I asked my audiologist once, can’t I just shove a pen or something in and we get rid of the hearing drum, she was like no! Do not do that, yep, that is how bad the sounds are. And the vertigo spells, they are so unpredictable.
       
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    19. Chriscom

      Chriscom Member

      Location:
      Northern Virginia USA
      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Likely infection/ear stress after walking pneumonia
      Thank you for all the work you do on a volunteer basis, it boggles my mind. I'm a new member and will donate on Tuesday, my next paycheck.
       
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    20. FGG

      FGG Member

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Meniere's
      Anti-virals help a lot of people with Meniere's. Unfortunately, I'm not one of them. Look up Dr. Gacek's research. Could be worth a try.
       

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