[Danny Boy Memorial Fund] A New Frontier In Patient Driven Research

Discussion in 'Research News' started by Hazel, Feb 15, 2019.

    1. 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)
      We're so pleased to announce that a beneficiary has been picked for the Daniel Ballinger Memorial Fund. The fund donors - all tinnitus patients - assigned the GBP 5,000 grant to Ms. Elouise Koops (PhD) of Groningen University.

      At Tinnitus Hub (the managing entity of Tinnitus Talk) we feel very passionate about direct patient engagement in tinnitus research, and this fund is truly a prime example of that. None of it would have happened without @Ed209.

      You can read more about the fund and the research in our blog post, where you'll also find a video interview with Ms. Koops.
       
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    2. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Great job @Ed209 and the BTA. And Tinnitus Hub.

      Ms. Koops was so sincere and thankful she was chosen for this grant. That was cool because it gives meaning for each of us who donated towards the grant. And mostly because of @Ed209 Danny's memory will always live on making others with tinnitus/hyperacusis feel better in some way.
       
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    3. Julien87
      Happy

      Julien87 Member Benefactor

      Location:
      France
      Tinnitus Since:
      2006
      Cause of Tinnitus:
      Noise exposure (concert)
      Thanks a lot Ed and everyone else who contributed.
      Congrats and my encouragements to Ms Koops!
       
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    4. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Congratulations Elouise! I look forward to hearing more about the research - and I'm sure we'll have more updates to share from her as she progresses along. She's the program manager of TIN-ACT so we will definitely meet her again at one of those meetings.

      I also want to thank @Hazel for not only taking time off her day work and attending the recent TIN-ACT meeting but also, being the star she is, being able to organize, direct and film Elouise for our interview! From filming to editing & publishing the video, it took us a record breaking 30 hours or so! What a fantastic effort.

       
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    5. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Markku and @Hazel
      The personal time and efforts you both spent for this important milestone of creating the first support group grant is the reason I so wanted to dedicate this fund drive for Tinnitus Hub/Tinnitus Talk so that those of us who are able to contribute to the costs can help take up some of the personal finance you both give to the community.

      https://www.tinnitustalk.com/thread...embers-can-raise-the-same-amount-first.33451/

      It is not too late to give.

      Hazel your interview is beyond perfect if that is possible. And you did this on your own time.

      Markku you spent so much of your own time with editing!!

      Ms. Koops interview was such a beautiful outcome for the cause.
       
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    6. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Great job everyone! Props to all of you.

      Elouise seems like a brilliant young lady. She will do great.
       
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    7. AUTHOR
      AUTHOR
      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)
      @Starthrower with your fund drive, you singlehandedly managed to cover a significant chunk of our running costs for the year (e.g. server fees, domain names, software subscriptions)! THANK YOU SO MUCH!!!

      Of course any additional donations will go into our projects like videos, podcasts, etc.
       
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    8. carlover
      English

      carlover Member Benefactor

      Location:
      London
      Tinnitus Since:
      1986
      Poor old Danny... If only we could have gotten to him... I would have driven to see him, Bristol wasn't it... 120 miles down the M4 from London. I could have gotten hold of him, hugged him... What an absolute tragedy.
       
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    9. PDodge
      Cowboy

      PDodge Member Benefactor

      Location:
      Woods of Alberta
      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Bear ate my Cochlea
      It's very sad, and thanks everyone here for your hard work. Looks like an excellent candidate was chosen.

      @carlover, we all would have liked to be there for Danny but I think he died in his sleep or something... please correct me if I'm wrong but there was no self-harm involved.
       
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    10. derpytia
      Pooptoast

      derpytia Member Benefactor

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      The official word was Sudden Adult Death Syndrome (SADS). :(
       
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    11. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Sector Alpha
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Maybe from stress?
       
    12. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      Could have been from Trobalt. PDR on Potiga mentions possible cardiac arrest according to a psychiatrist I had seen back a few years ago. He would not prescribe it to me because of that and also he had no familiarity with it.
       
      Last edited: Apr 18, 2019
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    13. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Sector Alpha
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Damn.... so sad.

      He was obviously well informed and interested in research. A very intelligent guy. I wish he were still around to give me his feedback on all the stuff I've been into. He died somewhat shortly after I joined the forum. I feel like we lost a valuable asset in this struggle.
       
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    14. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      Your method was a lot better than some of the dangerous DIY methods used by some members in the past. Trobalt had a black box warning from the FDA. With this tormenting condition I don't blame people for trying just about anything for relief though. I mixed and matched a lot of drugs and supplements myself.
       
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    15. erik
      Cool

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      I was gone from the forum for a while but remember my numerous interactions with Danny Boy, RIP!
       
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    16. Philip

      Philip Member

      Tinnitus Since:
      02/2013
      Cause of Tinnitus:
      Sinus infection or noise exposure or both
      Jesus I remember how flippant and pissed off I was with the cavalier attitude Danny Boy had towards obscure research chemicals and other meds for tinnitus.

      As someone who nearly died three years ago of substance abuse related to my tinnitus I should have been on here supporting people more.

      But I had learned to live with my tinnitus and avoided this forum because it always made it worse. Thinking about it brought it back above that level of consciousness whereby it would begin negatively affect me.

      I habituated and tried to forget and dissociate my inner self from the sound that is now actually in both ears.

      Anyway there is hope out there for all of us and I think help is on its way but in the meantime let's learn to put that evil genie back in the bottle.

      Condolences to Danny Boy and I'm very impressed with everyone who organized and contributed to his Memorial Fund.
       
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    17. AUTHOR
      AUTHOR
      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 Philip, thanks for the feedback!

      Did you ever write up your story in the Success Stories section? It's a relatively easy way of helping others.
       
    18. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Whatever happened to Elouise Koops?????????

      We would love to hear from her.

      It would take about 15 minutes of her time to log in and leave a post with a short update here on Tinnitus Talk. That's a lot less time than it took for us to raise the grant money! :)
       
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    19. AUTHOR
      AUTHOR
      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 contacted her, and we agreed on the following: She will write a blog post soon, presenting the current status of her work, mainly by showing and explaining brain imaging pictures. And then once she has more definitive results, we will do either another video or a podcast with her.
       
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    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Thanks, that's awesome and a lot more than was hoped for! Glad to hear her work is progressing. -TC
       
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    21. Ringeee

      Ringeee Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Not Sure
      Excuse me for asking, but how did this person pass?
       
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    22. AUTHOR
      AUTHOR
      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)
      Hey there. We (Tinnitus Talk) have been in touch with Danny's sister at the time. An autopsy was conducted and cause of death was determined as Sudden Adult Death Syndrome. So basically his heart stopped without any known reason.
       
    23. Ringeee

      Ringeee Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Not Sure
      Wow, that's so sad and terrifying.
       
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