[Danny Boy Memorial Fund] The Vote to Choose Our Preferred Research Beneficiary

Discussion in 'Awareness & Fundraising' started by Ed209, Jan 4, 2019.

    1. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      The time has come - for donors to Danny’s Fund - to make a decision on who should receive the money. This will be done the same way as before: if you are a donor, please comment below who your choice is, or PM me if you wish to remain private. We have had three applications which I will add below in the following order:

      • 1) Robin Guillard from Gipsa-lab

      2) Asma Ali K. Elarbed from NIHR Nottingham BRC/ Hearing Science, Division of Clinical Neuroscience, University of Nottingham.

      3) Elouise Koops from University Medical Center Groningen

      Please read through them carefully and make a considered choice.
       
      • Winner Winner x 4
      • Like Like x 1
    2. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      • Agree Agree x 1
    3. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I’d like to add that the original criteria included this:

      Each donor to the Daniel Ballinger Memorial Fund will evaluate each application and vote yes or no as to whether or not the application meets the criteria. Those eliminated from further consideration by a majority vote of “no” will be removed from the posting and the applicant will be notified. Remaining applications will then be considered. Each donor will have one vote. The applicant receiving the majority of votes will be selected for the grant.

      So, if any donors have any objections about any of these candidates, please make it known, and if a percentage higher than half of the total vote is recorded, we will eliminate that application from the running.

      Because it’s relatively straightforward, with three applications, we decided it would be faster and easier if we did this concurrently.
       
    4. MichaelO
      Angelic

      MichaelO Member Benefactor

      Tinnitus Since:
      04/2011
      #1
       
    5. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Just a reminder to everybody: to make it quick and easy to collate, please include the name you donated under along with your choice.
       
    6. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I vote for #1: Robin Guillard.
       
    7. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Ed209 I would like to defer my vote to your choice. All three sound promising to me.

      Thank you for what you have accomplished. And thanks to the BTA for overseeing this project.
       
      • Friendly Friendly x 2
      • Agree Agree x 1
    8. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      #2 Glynis
       
    9. derpytia
      Pooptoast

      derpytia Member Benefactor

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      I vote #3!
       
      • Like Like x 1
    10. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      #1.
       
    11. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      I think it's great to have a choice of 3 special people to take on tinnitus, - #1.
       
    12. Zeneth
      Spaced

      Zeneth Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Maybe noise?
      Everyone is having different votes, ugh I don't know who to pick.
       
    13. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I'll vote for #3 (Koops).
       
      • Agree Agree x 2
    14. 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 suspect that #1 (Guillard) will win, because it is the most directly cure focused. However, I’m not convinced by this application, for various reasons:

      • He is leaning very heavily on the work of just one academic, Professor Weisz.
      • He says he’s created a “brain rehabilitation tool,” which sounds potentially great, and who knows it really could be, but he does not describe how or why it works.
      • He says a study was conducted to prove the device’s “efficiency” (does he mean efficacy?), but doesn’t mention anything about the study methods.
      • This is a Master’s student and not a PhD student (like the other two), which might mean less likelihood of publication and less likelihood of the person continuing to work in the field.
      • Finally, for me this one seems just too risky to gamble on; without knowing more about his device, I have to assume it will likely fail and then we are left with nothing.

      So I agree with @Contrast, for me it’s between #2 and #3, which both seem promising and similar in the sense that they seek to understand more about the basic mechanisms of tinnitus in the brain and the nervous system. In my opinion, this is what we need: more fundamental research to understand the mechanisms; this understanding will ultimately lead us towards a cure.

      Out of the two, my vote goes to #3 (Koops). She asks a question that has intrigued me for a long time: If tinnitus is caused by hearing loss, why do only some but not all people with hearing loss get tinnitus? (And conversely, why do some people with only negligible hearing loss get tinnitus?) Answering this crucial question might just give us the holy grail, imho.

      Koops proposes to answer her research question by “comprehensively mapping the extent to which the auditory pathway white matter changes as a result of hearing loss and see if there are any differences between someone with hearing loss alone and someone with hearing loss and tinnitus and describe at which stages of the auditory system these differences occur.” Fascinating to me.

      @Ed209, I donated under my own name.
       
      • Agree Agree x 3
      • Informative Informative x 1
    15. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      You have a point.
       
      • Like Like x 1
    16. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I'm very disappointed with the third grade application proposals. All their proposals have been discussed from advanced research by myself and others where highly professional links have been provided. The applicants seem to understand some of the complexities of the ear, but they don't seem to have knowledge about other possible physical anatomy relationships.

      There's many cases of tinnitus where for hearing loss - transient auditory nerve demyelination is one cause.
      There's thousands of causes of physical tinnitus which is a different classification from sound and toxic hearing loss and they can't be completely compared unless crossover talk is considered.

      Many causes of physical and pulsatile tinnitus involves cervical nerves, spinal nerves, cranial arteries and 95% of all nerves that enter the brainstem from shoulders up provide somatosensory information. Somatosensory input notes a presence of disease or injury of peripheral natures often with compression. One common aspect is the C1 C2 connection to the jaw. Muscle strain from any of this can make a physical condition more dire.
       
      • Winner Winner x 2
      • Like Like x 1
      • Informative Informative x 1
    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)
      Maybe it's my limited understanding of the matter, but from what I understand, at the level of the brain it doesn't matter what caused your tinnitus, whether it's somatic or not, or what other physical factors are involved.

      The tinnitus mechanism in the brain is (likely) the same regardless of causes or triggers. And I do believe there's a lot of value in understanding this mechanism better, since it could well lead to a cure.

      Definitely, the issues you name are important, but I'm not sure I understand your criticism of these applications; are the proposals bad just because they don't focus on those issues?
       
      • Like Like x 3
      • Agree Agree x 2
    18. DebInAustralia
      Fine

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      #1
       
    19. Zeneth
      Spaced

      Zeneth Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Maybe noise?
      I vote #3 (Koops). I really think our main goal should be to find out why only some people get tinnitus and others don't... hearing loss can be a factor but there’s definitely something else... what if FX-322 works but doesn’t alleviate tinnitus?

      I donated as: Zeneth
       
      • Like Like x 1
    20. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Hazel Agree. I guess in talking tinnitus, all of us should consider every post on this board as it's that complex.

      I have gone back and forth with my thoughts on what part of the brain may have more tinnitus responsibility from research studies. With that it seems that the pituitary gland - cortisol, might have an important part. Applicant #2 does discuss thoughts on cortisol.

      Many researchers have also said that the vertebral artery and other far back side neck arteries of blood flow when reaching the brain has a play with all tinnitus. I have recently posted links to this. A neuro radiologist has told me of 400 tinnitus group patients of 400 neuros where very large amounts of dye were used - all had vertebral artery informality which can cause or associate with other physical problems.

      I don't think that there will ever be one cure for tinnitus as I believe that a lot of tinnitus is caused from a physical reason, but for some there's just hair cell death. Physical problems need to be addressed before signals to the brain will work.

      This is why I support awareness for the medical community to be more responsive. Physical problems need to found and addressed if possible. If it's hearing cell loss from loud noise or toxic medications then steroids and HBOT might help if treatment is given quickly.
       
      • Like Like x 2
    21. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I voted for #1 specifically because I think the priority of finding a cure or method for relief is much higher than figuring out why only some people get tinnitus and others don't.

      Not that it's not useful to know, but in terms of priorities, it seems a no brainer to me to be looking for a cure rather than a predictor.
       
      • Like Like x 1
    22. Zeneth
      Spaced

      Zeneth Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Maybe noise?
      I understand man, I think it's really hit or miss on him though, I think finding out what makes the difference between some people getting tinnitus and others not getting it is what will further lead to a cure (assuming FX-322 doesn't work).

      Why can't all 3 of these people just work together!! Haha.
       
    23. 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 totally understand why people vote for #1 as it seems to promise a cure. I just think it's very unlikely (particularly based on the limited info we got) that it will actually yield a cure, so too much of a gamble for me, personally.
       
    24. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I think it's a bit of an exaggeration to state that #1 seems to promise a cure. I'm pretty sure we all understand there is no promise. I will grant you that it does feel more down to earth and real, perhaps because it shows a history of execution and exudes entrepreneurship.

      The unlikelihood of outcome that concerns you is unavoidable. It is the very game medical research plays: they gamble that their hunch/idea is going to evolve into something applicable.

      If funding had been denied to projects that were "very unlikely" to succeed, the following projects would have been nipped in the bud: Neuromod, Bi-Modal devices at UMich & UMinn, FX-322, ACRN, AM-101, etc... I can't name them all because they all belong to this list. That's just how research works: the majority of the gambles fail (see trial statistics).

      Project #3 would undeniably yield interesting data if it was completed successfully, but even the best possible outcome for it would not be a cure. In my opinion, that puts it outside of the spirit of funding, and arguably could disqualify it for not meeting the criterion. Again, not that it's not an interesting project, but even if we look away from the lower mathematical expectation, I don't think it suitable for this particular fund (@Ed209 ).
       
    25. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Hi Greg, do you want to register a vote to remove candidate number 3?
       
    26. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Hi Ed,

      Yes, sure. I think it's the right thing to do if I want to faithfully represent the spirit of the fund.
      Again, it's not an indication that #3 is a bad project, only that it does not fit the criteria.
       
    27. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Ok. I’ve already noted your vote so I’ll add your appeal against number 3.
       
    28. 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.
      Can you vote for two?

      Because I really can't decide between #1 and #3, so if possible I would like to place a vote for both.
       
    29. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      OK thanks!
      To be honest I'm also hesitating around #2 but I think one could make a case that it can be accessory to a cure (because of the measurement factor), so I'm currently leaning towards not putting a strike against it.
       
    30. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Just want to remind that the outcome does not have to be a cure. The project had to be on the cure path.

      Understanding a basic mechanism would be considered by any scientist to have the potential to identify a therapeutic target. In this case it could be white matter tracks.

      TC
       
      • Agree Agree x 2

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