[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. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      If I’m not mistaken, a lot of good work happens in a hospital in Nottingham?

      So would you say we are all agreed that a call has to happen? We need to honour the result. As @David pointed out, there’s nothing stopping us from making sure that people of interest see our grant.
       
    2. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I’ve spent too long on pubmed :LOL:. My curiosity with the Cambridge Core was whether it would give some insight into some brilliant individual’s work. A way to target a potential candidate so to speak.
       
      • Like Like x 2
    3. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Might be easier to define the type of research do we NOT want to include. Since Danny was interested in Pharmacology can we eliminate research having to do with psychology, complimentary therapies like acupuncture, sound therapies, support mechanisms like phone apps, general wellness or other non-pharmacologic treatments like lasers or untrasound? We can ask for research that aligns with certain parts of the BTA Roadmap to a Cure.

      TC
       
      • Agree Agree x 2
      • Like Like x 1
    4. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I think we need to stick to the commitment made when asking for money, which is that the funds would be used to fund a cure.

      That doesn't exclude non pharmacologic treatments. As long as it's something that can help cure tinnitus, it is in the scope.
       
      • Agree Agree x 2
      • Like Like x 1
    5. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I applaud your effort @David and @Steve in wanting this topic to be an open discussion for all. For others who have rights as donators. Ones who may have knowledgeable thoughts that may include both the negative and positive aspects of complex medical and environment systematization. Otherwise discussions can appear that some have self special interests.

      An example would be why some don't vote, donate or take part in a political social process as they feel that narrow closed minded powers in control won't help to make a difference within their life or for the needs, rights and fair treatment of little people.
       
    6. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      10PM here. I'm heading off to bed, will have another draft and application late tomorrow. -TC
       
    7. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      There's complaints from some that few want to be part of the process, but thoughts from some receive no acknowledgement. Why can't all at least receive an informative rating from the leaders instead of being ignored. I know that I do not feel welcome and I do know a lot about healthcare systems in the USA. What has real importance is that many had discussed fund raising, university funding, scholarships, community support, healthcare attitudes and compassion understanding on other related threads where leaders just flew right over it. Special self interests needs no place here.
       
      • Agree Agree x 1
    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Thanks for your comment, GregCA. I've adjusted the wording in the document. Please review it when I post the next draft. All comments are welcomed and encouraged. -TC
       
    9. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Supporting a student ph.d education in tinnitus research seems like a sensible thing to do with the funds (given the insignificant amount raised). The chosen student could be someone who is then supported on a yearly basis by members of TinnitusTalk (example only). However, if it were me organizing all this, I would leave out all the paperwork and decision making that is being brought to the topic in this thread (and elsewhere). I mean... we are not talking hundreds of thousands of dollars here. So... why not keep it simple: choose a well-suited candidate for a scholarship and move on. It's way overkill to engage in having folks write proposals in consideration for the funds collected thus far.

      On a slight side-note, I recall how supporting a group of researchers on a continual basis was something I had hoped would have materialized from the Team Trobalt days (i.e. supporting Prof. Moore and his research into repurposing existing drugs for reducing symptoms of tinnitus). Studies involving repurposing of drugs don't carry the same price tag as new drug development (although that could also have been a possibility). Anyway... that was then, and this is now...
       
      • Like Like x 5
    10. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I just want to clear the air at this point as it seems people are falling out over this - behind the scenes - and I have no idea why. When I heard Danny had died my intentions were to setup a fund that would objectively help the cause by making something happen in the real world. Something tangible. However, it has proven to be ridiculously hard (which I expected), but what I didn’t expect is for people to get offended or upset.

      The positives are plain to see. We have managed to raise £4380 (so far), which isn’t a lot of money, but it’s better than doing nothing, and we can still achieve something with it. I think we have proven that we can work together and that we can do bigger and better things than just talk.

      In the future, this may path the way to more people believing that a large fund is possible with a community of this size. The parameters can always be changed to fit whatever one desires to achieve, because I now realise, that there are many people who don’t think the money should be going towards curative research (I do, but it seems I’m in the minority). However, this fund, as of right now, is 100% about funding biomedical research. I’m getting tired of all the arguing; you’re either in or you’re out.

      Once our objective is complete, you are all free to do whatever you want and you can fundraise for something else, if you wish. I won’t be around, though, because after this experience I don’t see the point anymore. There’s no hard feelings, but some of you are hard work. I’ve spent too much of my life on this to see people falling out, complaining, and generally being down about it rather than upbeat. It’s an experience I’d rather not repeat.

      I am extremely grateful to all who have donated and contributed. This has always been a team effort (in my eyes) and no one person is any more significant than any other.

      With all that said, I’m still very optimistic about what this fund can achieve both directly and indirectly. It will create our own slice of science and generate more awareness by getting people talking.
       
      • Like Like x 4
      • Helpful Helpful x 2
    11. 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're amazing and so proud of you and that you're doing this for Danny.

      Don't feel disheartened and I know this money will help in some positive way and that can only be a good thing.

      Well done.

      love glynis
       
      • Agree Agree x 5
      • Hug Hug x 1
    12. Hazel
      Dreaming

      Hazel Director Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      @Ed209

      First of all, thank you so much for all the time and effort you've put into this project so far. You've accomplished something truly valuable. I know that @Markku and @Steve agree with me on this wholeheartedly.

      Trust me, those (few) of us who are active as volunteers for Tinnitus Talk know how insanely hard it is to get the tinnitus community to come together; to mobilize people to take action rather than just moan and complain. We run into this obstacle time and time again. People complain about lack of awareness, lack of research, etc. etc. etc. But then when we approach those very same people and ask if they're willing to put in a few hours per week to contribute to the cause they claim to believe in, the answer is almost invariably no. It's very frustrating, since we have so many projects and ideas that could significantly improve the lives of people with tinnitus, stimulate research and awareness etc. (please contact me anyone reading this who is genuinely interested to contribute, we need your help!).

      So my impression from six months of volunteering for Tinnitus Talk and trying in vain to mobilize the community is that the complainers either don't really care as much about the cause as they claim they do, or they're merely interested in themselves and not much else. It does tend to make one cynical, believe me, we understand.

      But Ed, we need you here, so please don't give up. Let's talk further offline about how you can remain involved without getting too entangled in the politics of it all. There are different ways of contributing.

      For now, just: Thank You :)
       
      • Agree Agree x 6
      • Hug Hug x 1
      • Winner Winner x 1
      • Friendly Friendly x 1
    13. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Attached is the next draft of the call for applications and the application for the scholarship.

      The call is to students entering the final year of a Masters degree program or the final year of the research phase of a PhD program in the Biomedical Sciences. It says the scholarship is to be used for competing the research and must include preparation of a manuscript and submission to a peer-reviewed, open access journal. It says that submission of the manuscript is anticipated within 1 year of receiving the scholarship. In addition it asks the student to propose a dissemination plan for their results to raise awareness which might include travel related to presenting results at a scientific meeting. They might propose other, perhaps innovative avenues that make use of the internet, or maybe a not so innovative as a lunch and learn among other grad students or even clinicians- physicians and nurses, hearing therapists or audiologists that encounter tinnitus patients in their practice.

      The call says that the research to be supported should be biomedical in nature and on the path to a cure. It gives examples of strategies the tinnitus community recognize as being non-curative in nature. It refers students to BTA's Mindmap to a Cure, which by the way includes non-curative, management strategies and complementary therapies.
      I expressly ruled out non-curative and management strategies because donors contributed to a fund which called for curing tinnitus and Danny was interested in pharmacology. The money has to be used as donors intended when they donated.

      As before, these documents are offered in draft for comment and constructive criticisms. My view is that these are "living documents" , they may grow and change and in the end may not even be recognizable as what they were originally. This is especially true because the plan is to talk to investigators of interest who may have students working in their labs that are eligible to apply. Take Prof Tzounopoulos for example, I seriously doubt he is hands-on in the lab. That's what grad students are for and maybe one of them would like to apply for the scholarship.

      But, at this point, I'm happy if the documents are taken up by a "management team"- @Ed209, @David, @Steve for example- in fact, I recommend it. I'm happy to let them work out whatever is left to work out and come back to the group with the final concepts. Someone has to be trusted with making the final decisions.

      All the best, TC
       

      Attached Files:

      • Like Like x 1
      • Winner Winner x 1
    14. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I don't think you're in the minority. It often feels that way because, naturally, the "silent majority" doesn't express any disagreement with a plan to execute according to a commitment.

      I'm pretty sure most people who donated to a fund who was earmarked for curative research are happy that the funds are going to go to curative research. In fact, in the poll I ran to figure out why people didn't want to donate, two reasons stood out, one of which was the fear that the money would not go where it was supposed to. So it's pretty clear that keeping a commitment is important in donors' eyes. It's also common sense: nobody likes to be duped.
       
      • Agree Agree x 2
      • Winner Winner x 1
    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Right, it's called creating buzz. Especially appropriate when it comes to tinnitus! :LOL:
       
      • Agree Agree x 1
      • Winner Winner x 1
    16. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Ed do not underestimate what you have accomplished so far. I understand because I did the same thing back in 2004 with the ATA. My intentions were pure and honest and hopeful to help save others from affording a simple ENT examine and hearing test to supplying hearing aids and other ways to deal with tinnitus.

      It was also a way for me to deal with the pain of losing my friend and keeping his memory alive because he like Danny spent hours and hours and hours helping others on a support board.


      I know. I was shamed and shunned by many in the tinnitus community. They said his death by suicide was being used as some sort of glorification and he was an awful person for doing what he did and what it did to me. The fund was at the time greatly supported by the ATA and we never mentioned suicide. It was simply named the FDL Tinnitus Assistance Program without expounding on the reasoning behind my efforts.

      At that time no one or very very few on the support board (Tinnitus Talk was not in existence) would donate or allow any mention of the fund. People would openly criticize me and my intentions. As a survivor of suicide this only added to my own shame blame and guilt that I would deal with for years and years. To this day I still feel that pain by those people.

      So your efforts here in Danny's name was never treated in that manner. People here came together and donated in his name and memory.

      The entire incident made me leave everything tinnitus related for a few years but the scars remained in my heart.

      The saving grace was knowing that while the fund was in existence many many people were helped thanks to the efforts of the ATA past staff and certain board members who interviewed each applicant. The personal stories would remind them why the organization was needed. And I have to remember that is the memory to my heart.

      Don't you dare stop because you are why I am here and why I wanted to be involved with donating to such a fund.

      I have rattled on and on here and think it is important to stand up and speak out.
       
      • Like Like x 5
      • Hug Hug x 1
    17. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      I think everyone is working together nicely on this complex issue. And it will be a first.


      I sort of agree with @attheedgeofscience. Keeping it simple is probably a wise idea. I am not sure how.
       
      • Agree Agree x 2
      • Like Like x 1
    18. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      There’s a lot going on and I needed to clear the air. To be clear, there are no grudges or anything like that, just some misunderstandings that have been building up. This is not about me in any way; it’s about motivating this community to help themselves. What we have achieved so far proves this can be done.

      I know me and ATEOS haven’t always seen eye to eye, but I can see past all the previous nonsense between us and respect his opinion in this instance (he had nothing to do with my message earlier, btw). He also donated, so big thanks for that as well.

      The next step is to decide when to get the call out there, and in the meantime, look up some people of interest who we can target.
       
      • Like Like x 1
      • Agree Agree x 1
    19. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Steve suggested somewhere in here about looking to theories already in process. Something like that. I am not sure who Will Sedley is though. Is he a grad student?

      Someone like this may be a good choice to consider.
       
    20. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Hazel mentioned this in her post. How hard it is to get people to start action. @Markku and @Steve have held strong keeping this site alive and sometimes under great scrutiny.
       
      • Like Like x 2
    21. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      He's a Dr at the Institute of Neuroscience, Newcastle University. Does research into brain mechanisms for tinnitus, looking at prediction in the brain and how that relates to tinnitus.
       
      • Like Like x 1
    22. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Thanks @Steve. Are there grad students working there with him? Or he may have suggestions about students for the fund allocation from Tinnitus Talk?

      It will serve to work with theories already in progress.
       
      • Like Like x 1
      • Agree Agree x 1
    23. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      The thoughts that I posted on this or corresponding threads have little to do with this funding, other than medical research funding and scholarships being plentiful in the USA. All my thoughts associate with the USA. Millions of dollars are still needed for awareness and compassionate care. This site is helpful for those that need directional compassionate assistance.

      The medical community needs to be more responsible in use of resources for those with tinnitus as there's always a cause. Many can't afford hearing aides or coping therapy. Some others may not know which care direction to travel, but again this site provides ideas. We can't be by their sides in real life to see if they are getting proper care, nor can we be individually able to help with costs. This is where funding is needed. 35% can't afford nursing home care and that number is increasing as medical care costs are still going up.

      Many public schools do not have proper hearing testing and noise awareness. Some have a physical problem that may not be much of a general health issue, but it might be causing tinnitus. So the physical problem should be treated, but 'live with it' is sometimes what's heard from medical professionals. Besides trying to give ideas with limitations to ones to discuss with your doctor, I post about what takes place in healthcare systems, care attitudes and research. I have been there in one way or another for most of my life.
       
      • Agree Agree x 1
    24. advocate21

      advocate21 Member

      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      unknown
      Why are you trying so hard to post in these fundraiser threads? Barely any of your posts are directly about the matter at hand? To put it bluntly, what are you trying to say?
       
    25. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @advocate21 Just in brief:

      It's heartbreaking to see others with severity give up.

      Tinnitus associated medical and care compassion needs more awareness and funding. That is real with great importance. I've talked to many within a medical setting who need a professional made mouth guard or TMJ treatment and cannot afford it. Some need help with cutting thru the red tape that may include what needs to be done to have a chance of getting disability. Whenever I can't figure out a problem such as with my computer, I go to sites where I might be able to get ideas.
       
      • Agree Agree x 1
    26. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hello @Steve,
      Before I invest time in reading these papers, can you give me a little background? Is Dr. Sedley using Prediction Modeling as in a building a mathematical model that can predict outcomes? Also, would help to know what other applications this type of modeling is used for? For example, I was once involved with a project that utilized finite element analysis- I'm not an engineer, but the person doing the modeling was. One of the selling points of FEA was that its used to design and build airplanes. Since none of them fall apart in the sky, one can be fairly confident in that type of analysis.

      Any word on whether we can see the podcast?

      Many Thanks, TC
       
    27. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      Ed, just ignore all the negative people and do with it what you think is best :ROFL::ROFL:. You're a smart and responsible chap, we all have faith in you.
       
      • Like Like x 2
      • Agree Agree x 1
    28. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Hi TC,

      It's based on the brain predicting things, I probably can't do it justice with my lay explanation but here goes..

      The theory goes that the brain is always making predictions of what is going to happen, based on experience and learning. This helps us in daily life. When it learns something new it updates the model so that it can predict future events better, and likewise where there are gaps it makes predictions to fill these in based on previous experience and input.

      In the case of tinnitus the theory is that there is an event that causes the tinnitus to be heard (or series of events). Once it is heard the brain at some point learns to predict the signal - when it becomes chronic - and we keep hearing it even if the initial causation is removed.

      This quite neatly explains why those of us with certain personality types or traits, bordering on obsessive, seem most likely to have chronic tinnitus. We actively reinforce the prediction with our behaviour patterns.

      To treat tinnitus based on this model we have to find some way of interrupting the prediction and resetting the brain, making it unlearn the phantom signal of tinnitus.
       
    29. Soren

      Soren Member Benefactor

      Location:
      Denmark
      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Loud sound
      That sounds a lot like the basis of the neuromodulation devices that are being worked on at the moment.
       
    30. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      They work on a slightly different principle, although I don't know the particular techniques of newer devices. The main thing of something like ACRN is that it is focused on a particular tone (or tonotopic area of the brain) so recommended only for tonal tinnitus, with a focus on the most dominant tone. A treatment using the prediction model could theoretically work for any type of tinnitus as it works on the perception of the tinnitus signal rather than of a particular type of tinnitus.
       
      • Like Like x 1

Share This Page

Loading...