Support Dr. Susan Shore's Tinnitus Research

Discussion in 'Awareness & Fundraising' started by Allan1967, Nov 28, 2018.

    1. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Please @IAmCalifornia do not even worry about donating!! The first person to take care of is you and now is the time you let those of us who can afford to donate do so....for you and others that have hard financial situations. What you wrote here is so very important. Let us those who can donate and your input is important.

      @Allan1967 please be more understanding and considerate of those members here having hard financial times!!
      Your words read condesending to me.

      More to write later on guys.
       
    2. IAmCalifornia
      Wishful

      IAmCalifornia Member Benefactor

      Location:
      Pennsylvania
      Tinnitus Since:
      this year
      Cause of Tinnitus:
      i wish i knew
      At some point I will pick up the pieces I'm sure, get some job maybe, or inheritance. It's pathetic for me to go from a well paying career to begging for an allowance from my parents, who are retired FFS, just to eat or have bus fare.

      I understand everyone's frustration with lack of donations but it's just not that easy for some of us who have nothing. I put myself in crazy debt visiting ENTs and TRT guys (2 years ago when tinnitus ruined my life), look where that's gotten me. Just sick of the poverty shaming.

      Believe me, if I won the lottery tomorrow (I don't even buy tickets), I'd donate everything I have. Silence is truly golden.
      Tinnitus is a tough gig.

      Thank you @Starthrower.
       
      • Hug Hug x 1
    3. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I wish you all best @IAmCalifornia. Please be assured I have every sympathy with your position. Any one of us can fall on hard times over night so I am by no means looking down my nose at you.

      My principle, I guess, is that social media brings thousands of people together and unites them. And we should harness this and use it to our advantage. Whether that's donating on mass or emailing people or signing petitions the point is at we can put ourselves in a position of strength if we become organised.
       
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    4. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Give up @Starthrower, I'm not condescending anyone. I completely empathise with @IAmCalifornia. Any one of us can fall on hard times overnight. He's under no pressure or judgement from me to do nothing else other than consider the potential.

      The point I'm making, if people would only care to open their minds and listen, is that social media etc has brought thousands of us together. Social media can be a powerful tool in manufacturing change and we have a range of options open to us to that EVERYONE can get involved with little effort and financial risk.

      But it will only happen if people wake up to the opportunity before us.
       
    5. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      So you can't be bothered to type in a few digits to contribute towards something that could help you but you can be bothered to come back here and type you can't be bothered to fill in some details?

      Do you not see how illogical at is?

      This is the kind of mindset that needs to be challenged.

      Then you'll continue to experience tinnitus. It's as simple as that.
       
    6. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Unfortunately, Rajin is right. People generally don’t like giving away personal details to sites they don’t know. That will be a stumbling block for some.
       
    7. Deamon22

      Deamon22 Member Podcast Patron Benefactor Ambassador

      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma/Cold?
      If you have tinnitus, giving out personal data is probably the least of my concerns... :)
       
    8. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Same here. I’d fill as many forms in as it takes, but I’m talking about other people. The more information they have to give out, the more likely they won’t bother. That’s just how it is.

      I learned this on other fundraisers.
       
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    9. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I know he has a point Ed but you either do or you don't. You can't scream about wanting a cure and then abandoning ship at the first hurdle.

      They can have my penis length and girth as long they find me a cure!
       
    10. Karl Appleby

      Karl Appleby Member

      Tinnitus Since:
      07/2018
      Cause of Tinnitus:
      Unknown
      Thanks for the warm welcome.

      I meant funneled into non-research, they replied and said it's going directly to research.
       
    11. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Like I said, filling in a form wouldn’t bother me either, but it does bother others. I’ve had PMs before asking if they could send cash because they didn’t want to give any details away.

      Just giving you a heads up on the kind of things that will stop people donating.
       
    12. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      What's 'non research'?

      Granted I'd be annoyed if my money was used to buy the meat for a team barbeque but if it goes towards the wage packet of a vital researcher who knows their stuff and is dedicated to finding me a cure, then so what?

      The research IS the people.
       
    13. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      I've never understood why you would want to donate to research, but not to researchers' wages.

      There would be no research without researchers, right?

      You WANT TO donate to wages. Otherwise there's nobody to do the research. EVEN RESEARCHERS NEED TO SUPPORT THEMSELVES AND THEIR FAMILIES.
       
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    14. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Exactly and it's the mentality 'I'm not putting my money into researchers wages' that's stopping us.

      Seriously... do people think microscopes are going to work by themselves or highly trained people are going to stare down them for nothing?
       
    15. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      This is great and you are right in what you say about obligation to donate (unless one is financially unable). I lost my job thanks to tinnitus (and other health issues) but still donate a small amount a month to Action on Hearing Loss who told me they do tinnitus research. However there should be NO onus on anyone financially unable to donate.

      I'd like to donate a small amount Allan, but like others am concerned that they ask for your address and phone number without using an opt out of information sharing tick option, and there's no way of checking if that's a secure payment method.

      Can you get their admin to confirm or otherwise provide info on the security of the payment?

      What you are doing is brill but I lost money once before via an insecure online payment, it does happen.
       
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    16. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Good morning - good discussion going on here.

      Non-research usually means overhead. For some reason people don't like to see their money used to pay the light bill, heating bill, water bills, websites etc. It's maddening. How do they think the work takes place if the lights are out? I've seen less pushback about salaries, but if it's felt that someone is over-paid there is no end to the complaining.

      People also love to donate to equipment and building especially if their name goes on it. So in your example, @Allan1967, if a small plaque/tag were affixed to the microscope with the donors' name and dedication, people will be happy to donate.

      Big donors also like to make a splash. They will donate to equipment or a lab if it's named after them, but once the newness wears off they loathe to donate to maintenance.

      Motivation for a few people can be different - my husband teaches in the business school of a major university, the university allocated very little for students to make a trip that is part of their program. They tried to raise money and the contributions were trivial. He got so ticked he took out the checkbook and wrote a check himself.

      TC
       
    17. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      To Susan Shore's donation link?

      I sent Tinnitus Talk admin the chain of emails between myself and Susan's Director of Finance. Admin here can verify its legitimacy.
       
    18. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Yeah I'm getting the impression I'm wasting my time and people would rather suffer.
       
    19. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      No you are not.
       
    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      It's not a waste of time, but it's important not to burn out or set your expectations so high that you're frustrated and disappointed beyond belief. There are people on Tinnitus Talk who want to donate. It's the Facebook groups and others for whom the internet is not an option, that we need to reach.

      All I'm saying is we need to keep talking and supporting one another through this. TC
       
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    21. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Another thought I've had is this -

      We are expecting people to change a behavior - from not donating to donating. It's a recognized fact that that changing a behavior takes time. Also, the more complicated you make something the chance that there will be good compliance lessen. This stuff is in the psychology literature somewhere, I don't have the actual references but it's well accepted.

      The other thing is that in the smoking control category of consumer healthcare it's been learned that products that help someone quit smoking work best when someone is ready to quit.

      So we need to make people ready to donate and make it as simple as possible to do that. If we go around now trying to educate people and then several say OK, I want to donate and we don't have the link ready they will go away and not donate.

      The other thing is when we post a fundraising campaign. For some reason people are not seeing it and just view it as an opportunity to jabber on about their tinnitus. So - does something about the ad need to be changed? Does the fact it's a fundraiser need to be made more obvious? Better graphics, better picture etc? We can test those things out among ourselves.

      TC
       
    22. Karl Appleby

      Karl Appleby Member

      Tinnitus Since:
      07/2018
      Cause of Tinnitus:
      Unknown
      You think all your tax money goes to help the public? Pennies on the dollar.

      Most pays for office workers and whatever. I want funding straight to the team, not skimmed by higher ups and such.

      Are they providing open source fund tracking?

      I already said I donated $10 to her. Thanks for the warm welcome.
       
      • Agree Agree x 1
    23. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      It's the higher ups that drive it. It's the higher ups that push the lower downs for results because the higher ups have to answer to the higher higher ups. That is how business works.

      Thank you for your donation by the way, it all counts. Now if we can get another 50 million people to donate, we'll be on our way...
       
    24. Rajin

      Rajin Member Benefactor

      Location:
      PA
      Tinnitus Since:
      9/7/17
      Cause of Tinnitus:
      Hearing loss ,noise
      Look I was talking about other people, man cool down, ok. People will not donate if they have to fill out all that info.

      People like things fast, ok. They will give you 10 dollars but if they have to fill out all that info, they will not donate.

      I will eat dirt to hear silence. So filling out the info is no problem.
       
      • Agree Agree x 1
    25. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Sorry @Allan1967 your approach sucks and because of that I would never donate to your cause.

      Have you donated towards the running of Tinnitus Talk? How dare you assume people would rather suffer.

      You really have to respect other people's situations here. One should NEVER give out personal information on the internet!!! Maybe you and @Allan1967 don't care but some of us have been victims of fraud. Furthermore, I almost did not donate to Danny's fund because of that issue. When I raised my concerns I felt you did not care and stated that my concerns were unwarranted.

      But because it was important we did decide to donate. And it took a lot of effort to fill out all that information. It is something I would not do again. It is not necessary and you lose donors.

       
    26. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I completely respect everyone’s decision. I was just trying to tell Allan that some people don’t want to give out personal information which is why I agreed with Rajin.

      I don’t remember this at all; I’d never treat anyone in this way. If I’ve ever come across like that, I can assure you that it wasn’t intentional. I believe everyone is free to do as they wish and I’ve never tried to start personal conflicts with anyone about donating towards tinnitus research.

      I have, however, expressed my disappointment at the staggeringly low percentage of people who have come forward to help with any tinnitus related cause. And I still think that now. The numbers are just awful and there’s no hiding that. It is what it is.

      As a side note, I’ve noticed that this topic always starts arguments which is why I’m staying away from tinnitus fundraisers in future - as I said in the other thread a while back. There’s far too much animosity amongst people when we talk about money, but unfortunately, that’s the nature of fundraising. When people start falling out with each over it, I just don’t understand it.
       
    27. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Sorry if I have offended you @Starthrower.

      This is not my cause, it's everyone's cause but you have the choice to donate or not. What I'm trying to convey is that it would be great if millions of us came together as one and were instrumental in implementing change.

      I haven't donated to Tinnitus Talk yet, but I will.

      I do respect others' situation. I quite clearly sympathised with @IAmCalifornia and the other chap who said it was too complicated to fill in forms did imply he gave up initial but has since explained he was just feeding back an observation... so no harm done.

      As for never sharing your details online. I shop online, I donate online, I tout my career online and it's never caused me any grief except a few junk emails. So if you're careful it's not an issue if you ask me.
       
      • Hug Hug x 1
    28. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Ok... apologies. I interpreted your initial post was saying you started the process but then gave up.

      Thanks for the observation and donation.
       
      • Like Like x 1
    29. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I could understand heated debates if we were talking about thousands of pounds here that was possibly being wasted but I'm suggesting no more that a dollar a head per month or $12 per person per year as a means of raising big money.

      If someone can't afford it then there are other ways to help like petitions or actually doing fundraising.

      If you want to donate but don't want to give your details out online then mail it in.

      The point is stop putting barriers in the way. Find ways around a problem. Stop expecting everyone else to do something, be your own advocate.
       
    30. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Allan, you don’t need to tell me all this, I’m well aware of everything you’re talking about. I’m just saying that some people don’t like giving out personal details online.

      I’m not putting barriers up, I’m trying to knock them down and I’m not expecting everyone else to do something. I act and do whatever I can and I try to motivate others to do likewise. At the end of the day, the final decision on whether to help lies with the individual. We can’t force people against their will.
       
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