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 Podcast Patron 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
      Frustrated

      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 Hall of Fame

      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 Podcast Patron 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
      Wishful

      GSC Member Hall of Fame

      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.
       
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    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?
       
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    17. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron 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 Benefactor

      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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    21. PhyllisC

      PhyllisC Member

      Tinnitus Since:
      06/2008
      Thanks for the blog post, Hazel. It's good to know your take-aways and to be informed about what's going on in the field of research around tinnitus.

      While reading your post, it occurred to me that tinnitus is very much like pain, in that objective measurements are elusive, and it's a symptom, not a disease in itself. As an off-topic, my thoughts go immediately to functional impairments as a result of tinnitus. I'm hopeful that we also start to measure the impacts of tinnitus of function, be it as a worker, a parent, a partner, or another community role, as a way to interest investors in funding the research. This has helped the medical and public health communities start to take pain more seriously, and I think it will help tinnitus sufferers, too.
       
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    22. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Sector Alpha
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Do we really need any more proof that it is a living nightmare?
       
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    23. Daniel Lion
      Ape-like

      Daniel Lion Member Benefactor

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      We need more clones of you Hazel, this world would be such a better place. If you are cloned in mass production I promise I will be super nice and protective of you.
       
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    24. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      tri2019-exclusive-insights-tinnitus-hub.png

      Hey there,

      I've finally been able to make some time to compile a more in-depth report of the conference.

      You can read it here.

      With major thanks to the group of tinnitus PhD students whom I recruited as my 'roving reporters.' This was needed since I didn't have time to attend more than a handful of talks myself; I was too busy doing video interviews.

      Those video interviews, btw, are coming up real soon too! We interviewed Susan Shore, Dirk de Ridder, Arnaud Norena, and many more!

      If you like our efforts to report on research, please do share on social media!
       
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    25. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

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


      Hi there, here is the first of our TRI video series! For those who have read my blog posts - here and here - the video doesn't contain anything new per se, since it's just a general impression of the conference, but perhaps it does add a visual element.

      Looking back at myself featured in the video I can't help but feel I was being overly positive; perhaps it was just the excitement of being there. I definitely also had some criticisms on the conference, as my first blog post indicated - in particular when it comes to the absence of industry. Still, the conference is, I believe, an important - perhaps even crucial - element to progressing with tinnitus research. Without such events, each researcher will just keep working in their own little niche, and we're missing the bigger picture.

      Anyway, happy to hear what you think of the video, but please be kind! I'm critical enough of myself as is :LOL:

      The editing was done by our own tech wizard @Markku, as usual. This time he was joined by up-and-coming editor and design star @Autumnly. She is truly putting her talent to great use for the community, so please thank her!

      If you look at the top of this thread, you will now find two tabs: Discussion and Updates & Videos. The latter will feature static content only posted by us. This will make it easier to see the complete overview of everything we've published about TRI 2019 so far, and there's a lot more coming!

      Stay tuned for our upcoming videos: We will publish in a few days a mini-panel discussion featuring three researchers, and then at least a dozen individual interviews!
       
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    26. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

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


      Aaaaand, here's the next video! It's a mini-panel discussion of about ten minutes between three of the TRI staff members.

      Winny, Raj and Berthold are great proponents of involving patients more closely in research, and this is one of the topics they talk about in this video. A big thank you to them for their outreach efforts!

      For the hardcore research enthusiasts probably not much news, but I think it's awesome for the average tinnitus patient out there to get a quick taste of tinnitus research.


      As I said before, the more focussed interviews covering specific research topics are still coming, so stay tuned.

      In the meantime... If you like our efforts to report on research, please do share on social media!
       
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      Want to get a sense of what it's like to attend the largest tinnitus research conference as a patient?
      Watch this video with our general impressions of the Tinnitus Research Initiative (TRI) conference in Taipei in May 2019.

      Read about our seven key take-aways from the TRI conference!

      Read reports from different conference sessions and learn about the topics discussed at the conference!

      Watch a mini-panel discussions between three of the TRI staff members!

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