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

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

    1. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      182,000 posts in the Support category. 4,000 posts in the Awareness & Fundraising category and I'm told people don't want to give towards tinnitus research.

      Incredible dysfunctional thinking.
       
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    2. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Have you donated?
       
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    3. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hello @Allan1967

      Welcome to Tinnitus Talk. Most, if not all, of us here are believers in the need for tinnitus research and many of us act on it. Hope you get to meet more of the members here. You'll find quite a diversity which makes for some lively discussion.

      The Directors here are very interested in research and work in cooperation with BTA.
      Check out the Tinnitus Hub website https://www.tinnitushub.com/.

      TC
       
      • Like Like x 4
    4. Zeneth
      Wishful

      Zeneth Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Maybe noise?
      I just don't know who to donate to.
       
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    5. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Thanks for the welcome.

      More needs to be done. I've read all these posts 20 years ago but written by others. Only way forward is if we use social media to bring us together and have a moment's clarity where we realise that by ALL OF US giving a little at our end... At the other end it will amount to a lot and that can hopefully bring a cure closer to us.

      No more research on 'How this bothers me' or sending leaflets to GPs telling them not to be such dicks when a patient comes in... money towards research for a cure.

      Otherwise we'll still be here in 20 years' time asking the same things others were asking 20 years ago.
       
      • Agree Agree x 3
    6. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      American Tinnitus Association. British Tinnitus Association.

      Both of them. But do something.
       
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    7. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Hi again, @Allan1967. I spoke to you on your piano spike thread, but what I didn’t realise is that I also spoke to you on Facebook yesterday.

      Galvanising the tinnitus community in the way you are describing is extraordinarily difficult, and many efforts have been made to do this already.

      I’m not entirely sure what it would take to make it happen.
       
      • Agree Agree x 2
    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I don't disagree with you. Here on Tinnitus Talk, I have a sense that momentum is gathering.

      One of the Tinnitus Talk members, @Danny Boy, passed away and @Ed209 spearheaded a campaign using GoFundMe and Facebook postings to raise money. Danny was very interested in pharmacological cures for tinnitus so the money is earmarked for that. The BTA is helping us identify a master's or doctoral student studying tinnitus to receive the grant and will administer it. You can see the call on BTA's website. It's made clear that money is to support a project on the cure path. BTA have been gracious and decisions were made democratically.

      Only about a week ago, another member posted about a researcher at Georgetown University trying to raise money to do a pilot study on changes in the brain that might be contributing to tinnitus. The researcher is using GiveCampus for donations. The response has been slow.

      What's very different about Tinnitus Talk is that leadership is very accessible and keenly interested in social media. As Ed says, the response to fundraising could be a lot stronger. It sometimes feels like you're pushing a boulder up hill.

      The good news is there is an entire thread devoted to drafting a survey to learn more about raising awareness and fundraising among members. @Markku, one of the founders of Tinnitus Talk/Tinnitus Hub and @Hazel, a volunteer, sought out member input to the survey. @Steve, a co-founder of Tinnitus Hub, is frequently here. I'm not sure about the exact timing of the survey, but it's in the near future. Bottom line, leadership is trying to understand why fundraising has been such a challenge.

      David Stockdale, Chief Executive of BTA logs on here and interacts with members. Some, like yourself, are very opinionated about the need for a cure. If you look around some of the threads you will find that BTA intends to start fundraising for cure in the spring.

      Well, that's just the tip of the iceberg. There's a lot more to Tinnitus Talk than what I've described. But be assured, fundraising and raising awareness are active topics here and your positive input and help will be welcomed.

      TC
       
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    9. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      The Perfect Call to Action!
       
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    10. dayma
      Balanced

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      Just because people do not reply to Facebook posts or forum posts does not mean they have not donated either...

      If you asked for a roll call on who donated and to what you may get more feedback?
       
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    11. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      I give to hearing restoration research which should reduce tinnitus if it was caused by hearing loss.

      I'll give to the BTA once they show major efforts of cross discipline research.
       
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    12. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      There's no one to donate to. Frequency Therapeutics isn't taking donations and they are probably about to cure most tinnitus cases. A better thing to do is promote awareness of this company and their drug.

      Hearing loss from noise damage is most of tinnitus. Fixing that should fix tinnitus. There are 16 human beings on this planet right now that have the drug in their ear and we will know soon enough.
       
    13. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I'm on the north side of 60, so I don't think I should put all my eggs in one basket. What if it turns out that hearing is only partially restored and tinnitus remains in my brain? I really rather a cure than CBT or TRT.
       
    14. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      This whole thing that tinnitus is in the brain is ridiculous. Of course it is in the brain, because you have bio mapping of what you used to be able to hear. When the signal is removed, your brain is looking for the signal. If you can restore the signal the tinnitus will more than likely disappear.
       
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    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      But, the brain reorganized itself when the signal was lost. The loss left a gap in the tonotopic map in the auditory cortex and other neurons filled in the gap. How will it get un-filled?

      Plus, the connection between the cochlea and the auditory cortex involves 3 or 4 neurons arranged sequentially or end to end. Those connections would have to be reestablished. I can't imagine all that will happen after just replacing a few hair cells.

      Does Frequency Therapeutics say anything about that?
       
      • Good Question Good Question x 2
    16. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      I am not going to donate my entire net worth, and a $10, $100, or even $1,000 donation is not going to make any difference.
       
    17. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      I was hoping you would respond to this :ROFL:, worth.

      I somewhat agree, if there is an organization currently that has actually made a small improvement in tinnitus research and are not full of empty promises I will give whatever I got. I'm not even asking for a promise of a cure, just a history sheet of active research with some minor textbook improvements.
       
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    18. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Well, if everyone donated $10 or $100... who knows what is possible. Unfortunately, they just don't which is part of the reason why we are where we are today.

      Several tinnitus projects "on the go" - that you might consider donating to -
      Other organisations I consider to be worthwhile -
      • Hearing Health Foundation
      • Tinnitus Research Initiative

      It is my personal view that aside from the lack of awareness of the suffering tinnitus causes, the lack of financial support towards tinnitus charities and research initiatives is a large reason why we have no progress past masking, CBT and mindfulness.

      We have a unique opportunity here as a group (and we did have with Danny's fund) to come together, raise as much as we can and choose together a worthwhile cause to donate to. I don't think we even raised 5,000 pounds.

      There in lies the problem. Those that have tinnitus and are bothered enough to want a cure, and have the financial means, really need to start contributing to their own cause.

      @Bill Bauer, @coffee_girl, @Zeneth
       
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    19. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Yes TC! Love it.
       
    20. derpytia
      Pooptoast

      derpytia Member Benefactor

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      It's easy to have dysfunctional thinking with tinnitus lol :p

      I think one reason that people simply haven't elaborated on is the lack of hope in the tinnitus community. Even off of Tinnitus Talk, there are communities of people just like us who post to other places to get support and advice. But a consistent trend I see with all communities is a complete lack of hope, even with all the research and clinical trials going on.

      Tinnitus not only messes with your peace of mind but it also changes the way you think. I've had depression all my life but I was never as hopeless as I am now with tinnitus. It isn't that we don't care enough. We all care very much or we wouldn't all be dreaming of not living anymore on a daily, weekly, monthly, or yearly basis. We just have lost any sense of hope for the future after getting burned (more tinnitus increases, the lack of general care that the world has for us, failure after failure after failure in clinical trials).

      If you want people to donate you need a few things first:

      Clear and transparent information about who/what they are donating to, how their donation will be used, and something meaningful to hope for. If we don't have any results or anything at all to hope for then why throw money at anything at all.

      If you have to create that spark of hope yourself and then spread it to everyone else, then so be it. Movements that have either contributed to the advancement or detriment of society have been started on that alone.
       
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    21. derpytia
      Pooptoast

      derpytia Member Benefactor

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      Even those that aren't as bothered by it need to start contributing.

      Hint: I'm talking about big celebrities with tinnitus. They have MORE than enough money to donate. Just because they're celebrities doesn't mean they can't contribute.
      (William Shatner doesn't count lol. He's the ATA's lackey.)

      But I'm not holding my breath for these people to contribute.
       
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    22. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      I totally agree. However, my dad has what I deem severe tinnitus, and he is not bothered in the slightest. Not sure how I'd motivate him to start contributing.... lol. I'm sure he would if I asked though.

      As for celebrities, it would be great if they can get on board. Recently, Susanna Reid (and I have no idea who she is, but she's a UK TV presenter) tweeted about her tinnitus. This would be the perfect opportunity to reach out to her and see if we can engage her to help.

      However, there is such a big audience on Tinnitus Talk and on several other boards and Facebook Groups.
      In my opinion, these are the people we should be galvanising first, the broader public second. Often those suffering and their loved ones are aware of the pain tinnitus can cause, so hopefully engaging them as well would make a difference.
       
      • Agree Agree x 1
    23. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      I'll watch that TED video and I'll donate.

      Your post really resonated with me because I realize how skeptical I have been lately and maybe this isn't a good thing. I agree that you're either the problem or the solution. Perhaps even if nothing came of it, we cannot say it isn't worth it to do what we believe is the right thing. Deep down I know it is the right thing to do.

      I'll contribute to that Professor Rauschecker guy and I'll continue to donate every month for as long as I can.
       
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    24. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      @coffee_girl,
      Thank you, that is amazing, you've made my day.

      You are right to be skeptical, but if you have time to do the research, then you'll find these causes are worthwile, IMO.
      I donate knowing that nothing might come of it, but hey, I tried. I tried to make my life and the life of everyone suffering better.

      We will get there, keep pushing, work together and great things can be achieved.
       
      • Agree Agree x 4
    25. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Thank you all. Not only do you need to donate but now you all need to spread this. We need a shift in thinking.
       
      • Agree Agree x 1
    26. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      upload_2018-8-16_5-36-36-png.png
       
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    27. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Nothing ventured nothing gained, as they say. Unfortunately, tinnitus sufferers very rarely make the leap and donate to a tinnitus cause, and this is a big problem. We need scientific research to make the breakthroughs we all want to see, but this isn’t going to happen spontaneously. Researchers need to be backed if we want a better chance of seeing great things happening.

      As an example, you could safely say the majority of the community would love to see an effective treatment or cure, but on Danny’s campaign the percentage of people who donated was 0.2%. We easily generated over 60,000 unique views and out of those people around 150 donated. This suggests that people just aren’t prepared to back anything that increases our chances of something good happening. I hear it a lot when people say, “my donation won’t change anything”, but doing nothing will make that a certainty. At this point I refer you back to my opening sentence.

      In the 90’s, AIDS was a death sentence, but scientific research has changed this completely. The difference here is that they had loads of donors and campaigners and look what they achieved. If we all continue to think like Bill Bauer than nothing will ever change.
       
      • Agree Agree x 5
    28. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Same with my dad. He has significant hearing loss and severe tinnitus after working in factories and on the railway all his life. This was in the time before hearing protection was required by law, and let’s face it, in those days nobody thought about those things. He is also completely unphased about it and never brings it up.

      This further highlights the connection between our perception of tinnitus and our limbic system, so I can see why Prof Rauschecker is investigating this link in more detail. We need to better understand how we process tinnitus in the brain so we can understand the huge differences in how it affects people. A better understanding will also lead to effective treatments.
       
      • Agree Agree x 4
    29. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      This is true and whenever opportunity presents itself, take it. To effect change requires strong beliefs and persistence.

      Also, keep in mind that an ocean liner doesn't just make a 90 degree turn in the water to change direction. Instead small navigational corrections are made until the desired change is achieved. Calculated changes involves leadership, in the case of the ocean liner, it's the captain. At the risk of repeating myself, there are experienced, open-minded people at the helm here who are working with us and at the same time for us. We need to do our part - give input, answer surveys, challenge them politely, ask questions, share information, commiserate with @Jazzer and visit MPP for a few laughs. Did I leave anything out?
       
      • Agree Agree x 1
    30. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      The apathy you describe is utter insanity.
       

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