[Danny Boy Memorial Fund] The Vote Result and a Discussion on How to Implement It

Discussion in 'Awareness & Fundraising' started by Ed209, Sep 24, 2018.

    1. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      It’s now time to discuss how we are going to implement our plan.

      The results are below.

      Daniel-Ballinger-Memorial-Fund-Vote-Results.png
       

      Attached Files:

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    2. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
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      @Ed209,

      Will this be only the amount raised by Daniel Ballinger's fund or can it be a long-term fund for scholarships?

      love glynis
       
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    3. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I suppose it all depends how much interest there is to sustain continued support. The difficulty in raising the amount we have now makes it seem unlikely, in my opinion, but one step at a time. Let’s see what happens with this.
       
    4. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
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    5. IvanRus

      IvanRus Member

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ototoxicity
      Honestly, I'm depressed by the results of the vote.

      I believe that assigning a scholarship of 5 thousand dollars to some student will yield absolutely nothing in practical terms.

      This is an absolutely irrational waste of limited resources.

      What a student with little knowledge and 5 thousand can do?! They have no equipment, no staff, no experience. Absolutely nothing. This is a real fantasy.

      Especially since the ESIT program already exists in the European Union, consisting of 20 students. As we see, so far there are no research results in practical terms.

      To give 5 thousand dollars to a student is the same as leaving it on a motorway and let the wind take care of it.

      Only Dr. Thanos Tzounopoulos is on the right track, at an advanced stage, he formed his research team for years, and we really could help him with his finances.

      PS. I can see that 6 votes were removed from Thanos Tzounopoulos because of people who voted were not donors.

      But it is not entirely clear to me how in the general thread poll vote the option "Propose a scholarship and invite students to participate" had 12 votes, but in the final tally the number was 14.

      Screenshot_2.png
      Screenshot_3.png
       
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    6. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Ed209,
      Could it go to a university student whom is doing their Master's degree?

      20180924_104420.jpg
       
      Last edited: Sep 24, 2018
    7. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      The idea was the brainchild of @kelpiemsp. Personally, I thought it was a great idea to give the money to a graduate student who is studying tinnitus. I’ll paste his original text below:

      1. Alternatively, we could look at a scholarship for a student studying tinnitus. This would exempt the institution and the faculty. While research that pays a faculty professor is extremely expensive, many papers are actually researched and written by the graduate student and the faculty just reads it and puts their name as first author so it gets published. A 5,000 dollar scholarship to a student studying tinnitus would get quite a few applications worldwide and if we went this route, we could realistically request a paper. If this were the case, we could lower it to say 2,000 and try to make it an annual thing for a few years. Thoughts on that???

      As for the way the votes went, that’s democracy for you, Ivan. Everyone had the chance to vote and this is the result of what the majority of donors wanted to happen. The general vote result you posted, as a comparison, includes votes from non-donors on all candidates. Also, some of the donors are not on Tinnitus Talk and did not vote in that poll. To put it another way, if each of those people who chose Prof Thanos (in the general poll) had donated to the fund, then he would have won.
       
    8. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Glynis, I get the impression that very few read through the list of options in detail. The student idea is targeted at people who already have a degree and are looking to specialise (obviously we are going to be interested in anyone who is studying tinnitus and/or hyperacusis). Personally, I think the fund will go a lot further and will achieve significantly better value for money, by going this route. I’m pleased with the result, but in no way expected it to win when we began the voting process.
       
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    9. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
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      Good morning! Just woke up, having coffee and read the results. While the outcome is not what I voted for, I think this is a great opportunity to attract doctoral candidates or post-docs from neurology, neuropsychiatry or otolaryngology to take a look at tinnitus. I believe the application process should be open to all countries, people with tinnitus live everywhere.

      Besides, the award is based on merit and not need. The paper or project should be for biomedical research along the path of achieving a cure. I'm not in favor of supporting audiology, phone apps, sound therapies, psychology or any alternative or complementary treatment or therapy, simply because Danny was interested in pharmacology and not soft science or junk science. Tinnitus has enough of that already.

      Also, I may be getting ahead of things, but I feel strongly that the award should be about Danny. There must be some way of tastefully memorializing all the comments that were left on the GoFundMe site and sending it to the recipient along with the award. Plus if a paper is published there should be an acknowledgement that support was received from BTA in memory of Danny, a member of the tinnitus community. -TC
       
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    10. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
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      Make no mistake, Danny will be honoured in all of this and so will all the donors. Thanks for your ideas TC (y)
       
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    11. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

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      Thanks, Ed. I urge everyone to keep that in mind.

      I love this quote from @Kelvin which was made in reference to Danny and to the idea of student scholarships-
       
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    12. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

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      07/2015
      I think some of you are missing the potential of this idea. With the small amount we have, I personally think it makes a lot more sense, and it will also generate some much needed awareness.

      Our goal will be to inspire new scientists and bring fresh eyes to the problem.
       
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    13. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
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      Flu, Noise-induced, Jaw trauma
      Unfortunately Tzounopoulos needs approx $1m for Phase 1 trials, as I understand. That's just to check the safety, never mind the efficacy. The money raised is such a small drop it would not leave much of a mark.

      Thinking of a student and how that may get the maximum benefit, something along the lines of the work that Will Sedley has done would be beneficial in my eyes.

      There is a lot of science out there but nobody is really joining the dots and figuring out what it all means when bunched together, progressing the work that Will has done could be incredibly important. New insights are preferred but there is so much to be learned from reviewing what is already done and developing hypothesises from that.
       
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    14. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Actually I think that the best awareness of fresh ideas are from those who have tinnitus and other related condition problems who take the time to post here and support others.

      Many feel that they don't get enough support from healthcare for direction. Newer ones that come here are scared and are not able to become master researchers overnight.

      There's tens of thousands of research articles about tinnitus from A to V - acoustics to vitamins, but how does someone new to this condition know how to navigate thru the volumes of information. They can come here and get a helping hand.
       
    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

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      Is it accepted that there may be multiple causes of tinnitus but one common pathway where it is generated and maintained? If so, what are the possible therapeutic targets along that path?

      Is there enough good science around that would enable Sedley or someone like him to get close to answering that question or a least generate testable hypotheses that would lead to the answer? How is Sedley viewed in the research community, is there an inner circle? TC
       
    16. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
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      His work is on the prediction model, he believes it explains why many studies think they have identified a brain area for tinnitus, only for other studies to show a different brain area. To understand more, check out the papers at this link http://www.newcastletinnitus.org/previous-research.html

      Reading them will do far more justice than me trying to type a long message on the iPad, with the time spent going back over typo’s :)

      For me, Will is the most exciting researcher out there. I’ve heard a lot of talks, Will's work has stood out and been the most promising and interesting - along with Rauschecker and Lieberman (the bits I understood anyway...).

      I need to catch up with Will because last time we spoke he was looking at a treatment theory based on the prediction model, that he was to develop further...
       
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    17. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

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      Steve, I just read a lot of his ideas and also watched this:

      NTDF Will Sedley: Tinnitus Research...
       
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    18. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
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      Flu, Noise-induced, Jaw trauma
      We did a podcast with Will. We were going to do a series but other things got in the way. I wonder if @Markku could post it or link to it here?
       
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    19. Contrast

      Contrast Member Benefactor Hall of Fame

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      32:28

      He goes into detail about a potential gateway mechanism combined with hearing loss.

      39:00

      Mild hearing loss /mild tinnitus is more focused in the auditory brain.

      He goes into detail about how more severe hearing loss leads to more severe tinnitus taking root in regions of the brain completely unassociated with hearing.

      Very informative video @Ed209!
       
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    20. Tinniger

      Tinniger Member Benefactor

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    21. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

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    22. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @Tinniger means the discrepancy with the number of votes between the results of the vote thread and the image/pdf you provided. You explained why that is before. Tinniger must have missed the explanation:
       
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    23. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

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      If that’s the case he should have just stated that. The problem here is that hardly anyone has understood (or likely read) how this poll worked. The general poll on the voting page was largely meaningless as it had no bearing on the actual result. It was just a good way to see what the general feeling on this site was, and that showed that Prof Thanos Tzounopoulos was the most popular choice. However, many of those votes were not donors’ votes, so they don’t count. One also has to realise that this poll went far wider than just Tinnitus Talk, so some votes are from people who aren’t members here.

      With all that said, I’m noticing insinuations that I rigged the vote. I can confirm that all vote data is verifiable, and I gave full disclosure of this information to Markku.

      The result reflects what the majority of donors chose.
       
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    24. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      I'm due to speak with him on Friday.
      He's currently working on 3 projects to prove his theory and another on a potential biomarker for tinnitus.
       
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    25. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
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      Sorry, I only had the result of the thread vote in mind and now I saw another "first place" in the new thread.

      I have now understood that the votes of the "non-donors" do not count.

      Sorry for the irritation. :)
       
    26. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
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      This was my second choice vote.

      So how will the person be selected and how will the grant money be allocated to the person?

      Will the person be required (or asked) to report on how the funds will be used? Books? Classes?

      Will the person agree to spend one year working with tinnitus patients in some form?
       
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    27. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      Could the person who is given the funds be required to participate in this Tinnitus Talk forum to learn more about us patients??

      @Ed209 what do you think?
       
    28. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      These questions are all part of the discussion on how to implement our plan. At the moment nothing has been proposed so we are working from a blank canvas.

      What I will say is that donors will have a chance to see the applicants and can vote on who ultimately gets the money.

      It would be good if we could get a paper written in my opinion.
       
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    29. Candy

      Candy Member Benefactor Advocate

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      Well done @Ed209!
      Thanks for all your efforts in this! You're a busy man with a young family so thanks.
       
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    30. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Ed209,
      You made all this work and it is something so special in memory of Daniel Ballinger (@Danny Boy).

      Thank you so much Ed and everyone whom donated.

      love glynis
       
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