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

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

    1. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Sorry, Greg, I'm still missing your point.

      If the outcome of #3 is that white matter tracks in tinnitus patients with hearing loss are damaged in some way, but not damaged in those with hearing loss and no tinnitus, then white matter tracks are a potential therapeutic target for treating tinnitus.

      Thanks for the discussion, because I haven't made up my mind and this is helping, TC
       
    2. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Your argument does make sense. Let me tell you what drives my assessment.

      What I look at is the "degrees of separation with the goal". If you are familiar with the "5 whys" then I'm looking for the path with the minimum number of "whys".

      If one is really motivated to argue for a specific project, one will always find a way it can benefit a cure, however far fetched it can be. For example, research into faster CPUs is also going to be beneficial for T cures. The scientists use computers and run simulations. The faster the computers the more simulations they can run in an allotted time, and so more assumptions can be processed, which means more chances of success. Does that mean that the fund is well suited for research on silicon that can yield faster processor speeds? Well, I just (poorly) argued that it could.

      At the end of the day it's a personal assessment. I think the spirit of the fund is to invest money in projects that have the most direct impact to a cure. I could be wrong, but that's how I interpreted it when it was presented to me, and that's the reason I contributed.

      So when I judge a project, I look at how direct the impact is. #3 has some levels of indirection: once we know the first why, there will be another project we'll have to fund to figure out how to deal with the white matter (assuming there is a successful outcome on #3 - far from a given), which is another project in an out of itself, with its own success rate. And there is nothing wrong with that: it's the way research works, but the end game is, even in the best case, a few hops away.

      So I try to apply the spirit of the fund to pick projects that have as few degrees of separation as possible from the cure.

      It's not easy to do since we all have limited information and value different things. What I would assess as "very indirect impact" could be assessed by someone else as "very direct impact". I'm sure there could be some guy arguing strongly for the far fetched silicon funding above, but that's what votes are for. As long as we do it in good faith, then we are good.

      Again, this isn't to say that some projects have no merit. All of them do have merit in my eyes, but I do want to keep in mind the criteria that the fund was built upon, and try to represent it as faithfully as I can.
       
    3. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Wow everyone I am gaining so much insight just reading all the posts/votes here for Danny's college grant fund!!

      The comments and reasoning are all so important.

      @Ed209 do we have any sort of count for each request yet?
       
      • Like Like x 2
    4. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Current status:

      1) Robin Guillard from Gipsa-lab - 5 votes
      2) Asma Ali K. Elarbed from NIHR Nottingham BRC - 1 vote
      3) Elouise Koops from University Medical Center Groningen - 4 votes

      Assuming these votes are all from actual donors to Danny Boy's fundraiser. Ed209 will have to provide the information for that.
       
    5. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
    6. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I agree and I'm really grateful for this. I was on a Facebook group this morning. I rarely post in those because they don't do fun things like we're doing now. The irony is they are complaining that the Facebook groups have been quiet lately, they just keep posting the same things over and over, and the moderator said, get this, that there's no new research going on to talk about. I nearly fell off my chair.

      TC
       
      • Like Like x 2
    7. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      At the moment it stands like this (basically the same as Markku’s list except for Elouise)

      For

      1) Robin Guillard from Gipsa-lab - 5 votes
      2) Asma Ali K. Elarbed from NIHR Nottingham BRC - 1 vote
      3) Elouise Koops from University Medical Center Groningen - 5 votes

      (Elouise had a PM vote)

      Against

      1) Robin Guillard from Gipsa-lab
      2) Asma Ali K. Elarbed from NIHR Nottingham BRC
      3) Elouise Koops from University Medical Center Groningen - 1 vote

      @Starthrower
       
      • Informative Informative x 1
    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I see #1 as following the same business model as Neuromod.

      Professor Weisz did some work which resulted in a 30% decrease in tinnitus, whatever that may mean, and others successfully replicated Weisz's work, which gives it more credibility.

      Now, Mr. Guillad has designed a product based on Prof. Weisz's work and ran a pilot study for efficacy to see if he has also replicated Weisz's work. The analysis and publication of that data is the subject of the grant request.

      First off, pilot studies are difficult to get published. Secondly, if the pilot study is not successful, it's highly likely it won't be published. Mr. Guillard's product is based on a device worn on the head and software that engages the user and, I'm assuming, trains the brain or induces plasticity.

      Something I read leads me to believe that the pilot study was uncontrolled, so unless Mr. Guillard's product is a big pile of do-do, then its likely that the pilot will be successful and he'll move onto finding venture capital to fund big data, just like Neuromod!

      Well I guess that's not such a bad outcome and honestly it appeals to me because I worked in clinical research. But it's difficult to find placebos for these device studies, like the psychological treatments you have to be careful when interpreting the results and the strength of the conclusions you draw from the study.

      So the risk here is at the end, the device may fail in the market OR they may find a subset within the group of subjects they test that responds to the treatment - just like Neuromod found those with hyperacusis and tinnitus responded well to MuteButton. BUT, will there be a placebo or negative control in the clinical studies???

      It's all very, very interesting.
       
      • Like Like x 1
    9. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I will vote for #2, as that applicant's study is the closest to cause/cures of tinnitus.

      Tinnitus should be replaced with the words - peripheral conflict.
      Everything that's discussed on this board about tinnitus is peripheral including thousands of connections
      to the peripheral nervous system.

      Right Diagnosis lists 82,000 peripheral causes of tinnitus, including reactions to certain medications.
      Even symptoms of peripheral neuropathy may cause hearing problems, thus tinnitus.
      With somatic tinnitus it's often cranial nerve reactions.
      Subclavian, transverse, posterior auricular and the vertebral artery have involvement.
      With PT, it's often about flow.
       
    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Yep, thanks Greg, I understand where you're coming from now. Thanks for the time you took to lay it all out.

      I agree that #3 is far away from producing a cure. If white matter tracks to appear to have a causative role in tinnitus then the next question will be- what in the tracks are damaged? There's blood vessels in them and all kinds of supporting cells and even the cells that secret the myelin that's covering the axons.

      Then, what can be used to repair them? Growth factors, nutrients, vitamins, other agents yet to be discovered? How will they get across the blood brain barrier?

      Yet, I still find this intriguing and think that there should be more research like this and that the Rauscheckers, Sedleys, Ganders and others working in this area should all be comparing notes which will make even the failures an important contribution to the discussion.

      TC
       
      • Like Like x 1
      • Agree Agree x 1
    11. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      No problem! Glad it was helpful/useful.
       
      • Like Like x 2
    12. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Another reminder to everyone: can you state the name you donated under along with your choices, please. If you wish your name to remain private and confidential, then please PM your vote directly to me. This is purely to ensure fairness.

      Thanks, and sorry for sounding so blunt.
       
    13. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Excellent discussion so far. It’s good to debate and to see what other people’s opinions are, as that’s what this is all about: a real community effort. I’m still undecided but will make my vote in the coming days.
       
      • Like Like x 1
    14. Hazel
      Dreaming

      Hazel Manager Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      That's true, of course. But I think the difference is in our case we have only 5,000 pounds to spend. Bringing a device like Neuromod's to market costs millions, if not tens or hundreds of millions, with all the large scale clinical trials. Our contribution would be a drop in the ocean and in no way influence the ultimate success or failure. Plus, I get a sense that this guy already has funding, so our funds won't make or break whether he gets started. But that's admittedly reading between the lines.

      Considering our limited fund size, I would prefer a little more bang for our buck.

      That said, I can live with whatever the result of the vote is, and we'll do our best to steer the winner in a direction that yields meaningful outcomes.
       
      • Like Like x 2
    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      That's an interesting point Hazel.

      Mr. Guillard will no doubt have to go for venture capital to progress his work in the direction he wants it to go. At which point the pilot study will have little impact - just like everyone is waiting for Neuromod's study to be published and no one is looking at the open-label pilot study they did, it's superfluous at this point. I suppose if Guillard's pilot study is published with support from Danny's Fund it may be shown around (waved is probably more accurate) to some venture capitalists and then take a back seat as additional studies are done.

      On the other hand studies associated with #2 & 3 are more likely to become part of a cohesive body of academic search. Heck, there might be an opportunity to donate again and help another paper be published. Danny could become a part of ongoing research. Hmm.

      Still can't make up my mind.
       
      • Like Like x 1
    16. attheedgeofscience
      No Mood

      attheedgeofscience Member Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      For more than one reason, I am indifferent as to which candidate receives the money. As I see it, the best outcome that could arise from this exercise would be if the chosen researcher is supported over a number of years – essentially becoming a "financial protégé" of TinnitusTalk.

      Of course, on TinnitusTalk, most members do just that – talk... and... as always, everyone seems to have any number of excuses for not donating (a bit like those who forgot to do their homework assignment in middle school). Only thing is that the average poster here is not in school any longer...

      But one can always hope...
       
      • Agree Agree x 2
      • Like Like x 1
    17. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      He will not reach the venture capital phase if he doesn't get funding. Whether he gets funds from here or somewhere else, I don't know, but he needs money to reach the VC phase, unless he can manage to find people that work for no pay (we can all estimate the chances of that happening).

      I see comparisons to "million dollar trials" Neuromod that seem to forget that in its early days, Neuromod was most likely just as critically hungry for those few thousand pounds that enabled them to reach the stage they are in today.

      Other ventures didn't get the few thousand pounds to get started, so they are not even on our radar today. Perhaps one of them would hold the key to a cure. We will never know.

      5000 pounds is not enough to bring a cure to market, but it is enough to take an idea to a stage where it has good chances of getting the next level funding (friends & family, seed, venture, etc). We know that the amount we raised is modest: we can only afford to light up a spark with it. That's already very important, as most ventures do die very early from lack of spark.
       
      • Like Like x 2
    18. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      #1 Guillard
       
    19. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Sorry, this slipped between the cracks for me. You can only vote for one person, but you can also appeal against any candidate that you feel does not fit the criteria we set out to meet.
       
      • Like Like x 1
    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Ed209 Hey Ed! I tried the link in the email from GoFundMe and it took me to an error page in Tinnitus Talk. -TC
       
    21. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I tested the link before I posted it and have tried it again and it works fine for me. Is anyone else having a problem with the GoFundMe link?

      EDIT: I assume you are clicking the link and not the view updates tab? The snapshot only displays about half of the link in the description so it won’t work if you click it from there.
       
    22. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      It worked for me, if I recall correctly.
       
    23. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      That was the problem - I'm in the right place now! :)
       
    24. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
    25. InfiniteLoop
      Relaxed

      InfiniteLoop Member Benefactor

      Location:
      Redwood City, California
      Tinnitus Since:
      01/21/2014
      Cause of Tinnitus:
      Not sure. Maybe very high frequency loss in left ear.
      I don’t particularly like any of the three proposals: #1 looks like some sort of neurofeedback. #2 I do not believe that cortisol/stress are relevant for the most common hearing loss related tinnitus. #3 poses an interesting question but far from providing any treatment path.
      I vote for #1 as a less bad option.
       
      • Agree Agree x 1
    26. Jack Straw
      Balanced

      Jack Straw Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      I hate to be that guy, but I rather like them all and will defer my vote to the majority. They all seem like good candidates so I would be happy for anyone of them to win.
       
      • Like Like x 2
      • Agree Agree x 1
    27. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      It seems nobody is reading my messages and following the rules: if you don’t give your choice along with the name you used to donate then your vote will not count. Please PM your choice directly to me if you’d rather keep this confidential.

      So far, only a few people have followed the rules. If you have already voted, and not given the name you donated with, please PM me to make your vote count.

      If you decide to vote privately, you can still reveal what your decision was on the main forum and discuss your reasons why if you wish to.
       
      • Agree Agree x 1
    28. Kelvin

      Kelvin Member Benefactor

      Location:
      UK
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Dental Work
      Donation name - Kelvin Reed
      #3
       
      • Like Like x 1
    29. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Tough decision, but I vote for #3 (Koops) and donated as Tuxedo Cat.

      I'd also like to thank you guys for the excellent discussion yesterday, it was very interesting and helpful.

      I was on the fence between 1 and 3, but am going with 3 because I did not know Danny, but the legacy of posts he left behind on Tinnitus Talk suggest to me he was keenly interested in pharmacology and Ms. Koop's proposal is more in that vain than Mr. Guillard's proposal.

      Also, I'm very taken with the idea that Danny's memory could be honored on an ongoing basis by supporting future publications and attendance at research meetings as Ms. Koops moves through her doctoral program. And, I think it's more likely to signal tinnitus researchers that the tinnitus community is backing their work if we can support Koops as much as possible on an ongoing basis.

      Not everyone will share the same view, but we've got to respect each others opinions and decisions, because variety makes it interesting.
       
      Last edited: Jan 7, 2019
      • Like Like x 4
    30. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Hi everyone, just a quick update to let you all know that voting will end on January 18th at midnight (UK time).
       

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