Amazing — I'm Told People Don't Want to Give Towards Tinnitus Research

Discussion in 'Awareness & Fundraising' started by Allan1967, Oct 25, 2018.

    1. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Personally, I think there is a teaching moment when someone has first developed tinnitus and is seeking out advice, usually on the internet.

      Among what they learn should be the fact that research funding for tinnitus is limited, their support no matter how big or small is needed and they are encouraged to become active politically by supporting efforts to increase government funding.

      I'm US based and the political activity is something I wish ATA would involve members in. I'm more that willing to write letters or send emails.

      That's something that has worked very well locally where I live. The city was about to cut grants to one of the organizations that runs a program for homeless children and their families. The organization asked its volunteers to send an email to our councilmen. They even included a template because it's more about the amount of emails the official receives rather than every one being uniquely worded. It was effective.
       
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    2. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      The problem is that my donation will NOT be improving our chances.

      I despise Michael Moore, but I agree with the notion that he had once described: We should pray that some powerful people (or their relatives) get tinnitus. I think this is what must have happened ("important people" got a personal stake in finding a cure) as far as AIDS is concerned. Until those people get motivated to do something about tinnitus, my crappy donation is not going to change anything.
       
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    3. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      15 million people donating will though Bill. See the bigger picture.
       
    4. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      At this point it's not even about finding a cure, it's about gaining traction... yeah no doubt our donation won't make a difference right now... but it allows us to put the word out there, a few people can't do it on their own.

      This is about raising awareness and having good faith in humanity; I understand the cynicism but i don't think waiting for some billionaire to get tinnitus is the answer.
       
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    5. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      How do you know that?
       
      • Good Question Good Question x 1
    6. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      There are millions with tinnitus. If everyone donated we could raise an absolute fortune.

      Research would become far more prominent and one successful campaign would breed other successful campaigns because people would start to have some faith.

      No money = less research
      More money = more research
      More research = higher probability of a treatment or a cure. By default, this also means a lot more awareness of the condition.
       
      • Agree Agree x 6
    7. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Watch Professor Rauschecker's TED Talk. It's on YouTube and it may be posted somewhere on Tinnitus Talk. The neural pathway from the cochlea to the auditory cortex is probably on Google or a college level physiology textbook might have it. TC
       
      • Agree Agree x 1
    8. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      When I am making my decision, I have to think about the impact of this action.

      If I am the only one donating, my donation won't make a difference.

      If X (X>0) other people donate and I donate, my donation will not make a difference.

      So no matter what the other people choose to do, it doesn't make sense for me to
      donate.

      It is a version of the "Prisoner's Dilemma", where people act rationally, and still end up at a suboptimal outcome.
       
    9. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I know what you're saying, but we need a global awakening.
       
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    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I live in the Southeast US. The super market chain here will run a week long fundraiser for a registered non-profit. When you are paying for your groceries, the cashier asks if you'd like to donate $1 to the cause and it just gets added to your bill. It's painless. I've never said no because there's no time to think about it.

      And what's the difference if the bill is $30 or $31 dollars? I've never seen any statistics but I've got to believe they collect a lot of dollars.

      Does Tesco or Sainsbury's do that in the UK?
       
      • Good Question Good Question x 1
    11. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      Yes, apathy is a disease. It is the greatest evil that has afflicted mankind. I am immensely apathetic. I don't take care of myself, I hardly eat, I choose not to do things that would greatly help me, I haven't contributed to my future, I don't advance, I don't self improve.

      It's a huge effort to buy myself not only things that I need, but things I'd enjoy. Hell no am I going to donate.
       
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    12. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Then you're destined to suffer.

      I'd rather have a destiny where I know I'm going to suffer but there's a chance I might not.
       
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    13. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Precisely. Good to see I'm not the only one who gets it.
       
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    14. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      If hearing loss caused tinnitus, restoring hearing will probably fix it. Frequency Therapeutics will know this by December.
       
    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      That's not far off-awesome! Thanks, John.
       
    16. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Allan, if you're not already aware, there is some encouraging news. The amount of tinnitus research has been increasing over the years. Somewhere on Tinnitus Talk, David Stockdale posted a chart that shows the number of papers published on tinnitus by year. It's definitely on the upswing. -TC
       
      • Agree Agree x 2
    17. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      .......meaning what exactly.......?
       
    18. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Indeed:

      number-of-articles-tinnitus-pubmed.png
       
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    19. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      Interesting thing to say in a thread that is whining about people not donating.

      Edit: To expound, raising awareness and getting donations can be very communal based. I don't know you, you don't know me. I write and am open about my situation despite knowing it is humiliating. Just to explain and offer a non-circle jerk view, not to attack. Given your response to that, I wish you luck should you ever want to get people to donate; you'll need it.

      For tinnitus at least, whether or not I donate, I'll still get a cure whenever everyone else does. ;)
       
      Last edited: Oct 26, 2018
    20. Manny
      Dead

      Manny Member Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
    21. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      BTA's Annual Research Review 2016, I believe.

      I can't find the 2016 version on BTA's site, I can only find the 2017 and 2018.

      The BTA Annual Research Review 2017 included a similar graph about hyperacusis and misophonia:

      hyperacusis-misophonia-pubmed.png
       
      Last edited: Dec 3, 2018
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    22. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
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    23. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      Agreed. There was a poor teenage boy with severe hyperacusis with a GoFundMe page that, unlike Danny's, got fully funded.

      How? It was in a news article that it wasn't getting funded, and a couple of rich people dropped thousands of dollars on it.

      The only reason it did so was because of those rich people, not the little guys tossing pennies. If the rich people didn't swoop in it would have been like Danny's.
       
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    24. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Advocate

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      All I know is that talk is cheap. The focus should be on action. You are what you do, not what you say you will do.
       
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    25. Bart
      Doh

      Bart Member

      Location:
      Antwerp
      Tinnitus Since:
      05/06/2014
      Cause of Tinnitus:
      2014 Noise / 2018 ototoxic meds
      We have governments that rather spend billions on drone bombing and useless wars than on scientific research, this is the sad truth.

      Imagine what we could do with just a tiny fraction of what the US spends annually on its ridiculously bloated military budget.
       
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    26. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Exactly. Go to where the money is.

      I have talked about my long ago experiences with this before, but the care need wasn't tinnitus. Once had membership to a money manager investment platform as having investing rights to invest for other people. There I mentioned that a certain drug company needs a second look as they were developing a blood treatment. Within a little time the stock price rose. I was then credible and asked the famous money managers to donate to a care need. Some did with wide open checkbooks and I got to meet one of the money managers in person who also thanked me for the investment.

      I had talked here briefing about tinnitus and US tax form donation and figured out another associated cross pattern, but this would take cooperation from several other associations. Mentioned which associations need to list tinnitus as a disability. If I didn't have severe tinnitus and physical disabilities I could organize professionals in different areas to take this project on.

      I gave a list here on the publications and online sites that the rich have membership and subscriptions to. It's not a matter of placing ads, but seeing how to get more direct contact with them.
       
    27. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      The Rauschecker talk starts with him saying tinnitus comes from hearing loss from acoustic trauma. My tinnitus started immediately after my acoustic trauma. There was no time for my nerves to reorganize. My brain was immediately looking for the signal. It still is. Restoring the lost frequencies has to alleviate the tinnitus. That is the best possible explanation.
       
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    28. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      You are all missing the point. We have unbelievable untapped potential if people were to just commit and step up. Danny’s campaign has had decent exposure; if everyone gave £10 we would have made around £600,000. If everyone gave £20 we could have accumulated over a million pounds.

      We can’t sit around waiting for rich people to take an interest. This strikes me as idealist, lazy, and weak. It’s a mentality that I’ve never had, because when I want something, I try to make it happen. I don’t wait for other people to make it happen for me.

      If rich people want to get involved, awesome, but why cop out and rely entirely on that happening? I know most people would rather spend their money on frivolous crap - which they won’t think twice about - and then they’ll come on here asking where the treatments and cures are, or why we aren’t being helped more. I fail to see how it can mean so much to people when they don’t even want to invest £5 to help out.

      I thought this was life and death stuff? I mean think about it, what’s £5-£10? I bet some of you spent that in a drive thru earlier today. You need to evaluate what’s more important, being directly involved in tinnitus research, or eating a Big Mac meal?
       
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    29. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Ed209 I agree that some can afford to donate a few Queens or Jefferson's, but this would not raise the multi millions needed for any awareness or care.

      I think that idealist is a term that you don't fully understand and then maybe you do and well as with some others per personnel motives.

      The types of suggestions that I have made above have been the only methods proven to raise large sums of money.

      For some who can't afford to donate, it's difficult on them to be often called out.
       
    30. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      If I’m being absolutely honest, I’d say most can. Let’s face it, we need internet access and devices just to access this place. However, I’m aware that some genuinely can’t afford to donate and that is absolutely fine and those people should feel zero guilt. This message is aimed at those who can but choose not to, and yet still want treatments. If you can afford to but simply don’t want to, well that’s totally fine as well. We can’t be tyrannical. However, I feel those who fall into this latter category have no right to complain about the lack of treatments.

      If this is so easy then why hasn’t someone already done it? I’m aware of Matteo De Nora, but I’m talking about people from within this community? It’s a bit idealistic for my liking. All I know is that we could easily raise over a million pounds and get the ball rolling on some major research. Repeated success of this kind funds further research and things quite easily snowball after people see it’s possible. Belief is all people need, and then even the Bill Bauer’s of the world will be chucking their money in. Not to mention the media attention it would attract.
       
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