Support Dr. Susan Shore's Tinnitus Research

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

    1. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Hi all,

      This is a newly created link to donate to Susan Shore's work.

      She needs our help. In fact they all do. If you can, give a little and often.

      The admins here will verify the legitimacy of the link via the email I have sent them from Susan Shore's Director of Finance.

      This link was specially created at my request, so please, let's get busy.

      https://victo.rs/2QlhJ77
       
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    2. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @Allan1967

      Before I part with my cash that I worked hard for, can you tell me why she needs more funding, and how much does she need? As far as I know, she has already secured funding for her current trial?

      The donation page is very poorly put together, there are no details that you would expect to find on a fundraiser page!

      I'm worried my money will go to the deep pockets of University of Michigan and not make an actual difference. I share similar concerns with @Starthrower... her experience was bad with Oregon Health & Science University.

      Why can't researchers handle fundraising better and more professionally?
       
      • Agree Agree x 1
    3. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      It's a newly created link, made only after I asked if they had one, which they didn't.

      Why do they all need funding?

      To continue research.

      Will your $10 (for example) make a difference?

      Probably not.

      BUT if EVERYONE frequently donated a little, it might just make for a huge difference.

      Imagine if 10 million Americans donated a dollar a month. That would be $10 million a month going towards a cure, which MIGHT, just MIGHT bring us a cure 5 years closer to a cure, rather than 10.

      For the price of a Big Mac and fries once a month that's a gamble I'm prepared to take as an individual with my money. I waste more money on other crap each month, so I might as well give a little to something that impacts my life significantly.

      And if they come up with one... I'd let them keep the spare change and clean their houses butt naked for free, if it rids me of tinnitus.

      If they didn't, then at least I know I didn't just sit back hoping they would and I did my small part to try and make it happen, sooner rather than later. Because 'hoping' something will happen isn't actually going to make it happen. Cash to fund research will.

      And if a % goes towards a executive's pay cheque, fine, because these people have worked and studied hard to be where they are and I don't expect them to spend their lives being part of the machine that's trying to find me a cure for minimum wage.

      That's my viewpoint anyway.
       
      • Like Like x 1
    4. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi Allan, the link works and I donated a little. All the best, TC
       
      • Like Like x 2
    5. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Great stuff TC. I'm not preaching to anyone WHO they should donate to... I personally donate $20 a month to Thanos Tzounopoulos, but I believe that if thousands/millions of people all donated a small amount, whatever they can afford, every month to the top 5 players, then:

      1. We spread our odds
      2. We generate thousands of dollars, with very little effort and low risk to ourselves
      3. We'll see advances quicker rather than later

      Top 5 players in the field of research. 50 million people donating $1 each a month equals $50 million being generated per month, divide that by 5 equals $10 million per researcher. And all it takes is 5 minutes of each of our individual time. No fundraising, no running marathons. 5 minutes a month each at the cost of a dollar.

      It's a no brainer.
       
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    6. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      It really is a no brainer and I agree completely, but it is a fairy fantasy......we are NEVER EVER gonna get 50 million sufferers to donate, let alone 5% of them.

      It is like the saying: "you can bring a horse to water, but you can't make him drink".......Most tinnitus sufferers don't want to drink.
       
      • Agree Agree x 2
    7. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Allan, your sentiment is spot on and I agree with you wholeheartedly. If we could get the ball rolling and create a snowball effect, others may start to believe and join in just like what happened with the ice bucket challenge for ALS.

      However, it’s incredibly hard to get people to like and share campaigns about tinnitus, let alone get them to donate any money.

      The stats showed a 0.1% donation rate on Danny’s Fund, and it may have even been less than that. That stat includes many donations from people who were not a part of the tinnitus community, but rather friends and family.

      There’s been further efforts to ignite interests in tinnitus over the last couple of weeks by myself and ATEOS, and the stats were even worse. Out of thousands of people, nobody donated. Getting 50 million people to donate is beyond our scope, but don’t let me put you off. Your passion is a breath of fresh air.
       
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    8. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Susan Shore should come here to Tinnitus Talk forum and write a few words. Even a dedicated different forum for those researchers to post - without allowing responses.

      And these are the questions she should address.
       
      • Like Like x 3
    9. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Point two has already been addressed.
       
    10. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Cheers. It boils down to this: the tinnitus community need to wake up to this very simple concept.

      I mean fucking hell, it's not hard... every tinnitus sufferer donating the price of two fucking happy meals from McDonald's annually equates to a fortune at the opposite end which will hopefully lead to an end to THEIR suffering sooner rather than later.

      It's not fucking rocket science. And if it doesn't work well fuck me, all it cost was the price of 2 happy meals a year. Big deal.

      I throw more money away on a gym membership I don't even use.
       
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    11. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I'll settle for a thousand people. It doesn't matter.

      The point is this concept, it:

      1. Costs you little with no risk
      2. Doesn't require any fundraising shenanigans
      3. Will raise money quickly and easily
      4. We'll have a say who it goes to, not the ATA or BTA.

      What matters is people getting off their arses, stop hoping and praying and crying out for salvation and do something about it to make it happen.
       
      • Agree Agree x 2
    12. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I agree Allan. You’re preaching to the choir here and I’ve been saying this for ages, but nobody seems to take any notice. It’s frustrating.
       
    13. IAmCalifornia
      Wishful

      IAmCalifornia Member Benefactor

      Location:
      Pennsylvania
      Tinnitus Since:
      this year
      Cause of Tinnitus:
      i wish i knew
      Serious question:

      Do a lot of tinnitus sufferers have access to lots of funds? Maybe a poll should be conducted on that one...
       
    14. Karl Appleby

      Karl Appleby Member

      Tinnitus Since:
      07/2018
      Cause of Tinnitus:
      Unknown
      I signed up to the forums just to make a $10 donation to Dr. Susan Shore.

      Since University of Michigan allows replies to their donation email confirmations, I specifically asked them "Will this money be used for tinnitus research, or go to the pockets of employees?"
       
    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Welcome to Tinnitus Talk, Karl. And, thank you very much for donating.
      What brought you here to Tinnitus Talk? We're very happy to meet you.

      Have a look around and when you're ready please introduce yourself.
      In the meantime, if you have any questions don't be afraid to ask!

      All the best, TuxedoCat
       
      Last edited: Dec 3, 2018
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    16. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      A dollar or a pound a month? As we all appear to be paying for internet connection I would hope so.

      What is it about the concept of 10k people a month donating a $1 or a £1 a month each so we can donate £10k a month towards promising research that doesn't compute with people?

      I could understand if I suggested $10 to a $100 a month but I'm not.

      This is about the power of social media bringing thousands of people together as one voice that can bring about huge change if the only they would grasp this.

      Do you want to see the back of your tinnitus or not?

      I'll assume you do.

      Well... hoping, praying, trying snake oil etc is not going to make it happen. Medical science will.

      20 years ago there was no cure for impotence... now we have Viagra.

      20 years ago there was no cure for going bald... now that is about to be cured.

      It's only a matter of time. Do you want to speed this up or do you want to sit and wait?
       
    17. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      So do you expect researchers to spend years studying at University for a degree and then spend all day in the lab RESEARCHING a cure for us for nothing?
       
    18. IAmCalifornia
      Wishful

      IAmCalifornia Member Benefactor

      Location:
      Pennsylvania
      Tinnitus Since:
      this year
      Cause of Tinnitus:
      i wish i knew
      I use internet library as I'm barely welcome at my own parents place. I lost my wife, family, and house. You don't know me or my history. I don't even have 15 cents to my name anymore, have severe and crippling debt due to everything that has happened since tinnitus/hyperacusis appeared... as I lost my career and my family thinks I've lost my mind as they know nothing of tinnitus despite me trying to explain.

      So thanks.
       
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    19. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Sorry to hear that and if that's the case then don't donate. But the trouble is too many people who can afford it don't because they have the wrong mindset, i.e.

      - I'm not paying money for it to go to researchers wages

      I say: You're not expecting these highly skilled people to work for free are you?

      - It won't work because... blah blah blah

      I say: That is your amateur guess, isn't it?

      - It'll never be cured.

      I say: You don't know that. Can you predict next Saturday's lotto numbers for me while you're at it?

      I see posts on Facebook with people saying 'tinnitus cure or a trillion dollars?' And most people say tinnitus cure.

      Yet people won't even part with a dollar.

      The moral of the story is if you want a cure, you're going to have to do what you can to help.

      And if you can't afford it... make sure you're signing petitions, emailing your government, spreading tinnitus awareness etc etc.
       
      • Agree Agree x 2
    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Allan, this is Brilliant!

      This is like a training manual for research advocates. Anyone can become one with these answers in their hip pocket!

      TC
       
    21. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I've endured this shit for 20 years TC, whether or not I see a cure in my lifetime is debatable but I have children... I don't want them to suffer or their children, so we owe it to them to leave behind a world that's free of this condition.

      If we can't be cured ourselves let's be the pioneers that made a cure happen because the other option is we just sit around hoping it will happen and the reality is hoping it will isn't going to help much.
       
    22. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This is the conundrum of the tinnitus community. People want a cure but they don’t want to spend a small amount to help make it happen. I’ve been trying to get people to do this for ages but the resistance you face is demoralising.

      I understand that some are flat broke, but the majority can afford £1 or $1. When we realised the minimum donation on GoFundMe was £5, I offered to give my bank details so that we could get groups of five people to give £1 each and then I’d donate all the £5’s to GoFundMe.

      Nobody came forward to give £1. Not a single person. To me, unless you’re homeless you can afford £1, but you’ll find nobody wants to give it. Most really would rather buy a cheeseburger or something else with it instead. These are the facts. Raising money for tinnitus is absurdly difficult.

      I’m not knocking people who genuinely can’t afford £1 or don’t want to give; I’m just saying it as it is. Other charities generally generate a lot more than the tinnitus community do. And yet, many in the tinnitus community are really vocal about wanting a cure? I just don’t get it.

      You only have to look at the percentage of benefactors on this site to see how important it is to people. All the hard work that goes on here and still many don’t think Tinnitus Hub/Tinnitus Talk is worth supporting. The cost to run this place alone should inspire people to donate a small amount for what they get out of it, but that’s human nature for you. If it’s free, most will just opt out.
       
    23. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Agreed @Ed209 and it annoys the fuck out of me.

      We want a cure YET won't do anything to make it happen. Insanity at its finest.
       
    24. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Indeed, a lot of hard work goes on here. Check out this post from MPP.

      Markku was up until 3:30 AM editing footage from this session. Even at that hour he was still thinking about the needs of others who are hard of hearing and subtitling the video.

      And, today they are doing a Q&A with Neuromod for the benefit of the tinnitus community.

      Then there is the upcoming interview with Gaby's mother and with Professor Rauschecker.

      Please keep all this in mind when you're deciding where to donate during the current giving season.

      Many Thanks, TC
       
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    25. Deamon22

      Deamon22 Member Podcast Patron Benefactor Ambassador

      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma/Cold?
    26. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      For reference: https://www.tinnitustalk.com/thread...nating-to-tinnitus-related-fundraisers.31208/
       
      • Like Like x 1
    27. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      We need a plan. Any suggestions to start?
       
      Last edited: Dec 3, 2018
    28. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      This is first and foremost my reason for donating to research. I've said this before, I would not wish tinnitus on my worst enemy. I am realistic, a cure may not happen in my lifetime but research needs to continue for the sake of future generations. There needs to be more research to get researchers talking to one another, challenging one another and just plain thinking to the point of agreement. Right now there are many theories about the origins and chronicity of tinnitus.

      From Phillip Gander, PhD, University of Iowa- "As things start to reach more of a critical mass with respect to studies, then there will be more commonalities, not necessarily more differences."

      We. the tinnitus community, need to be stewards of research by showing our support and taking care of the needs of tinnitus researchers so they reach that critical mass. Donations help, but there are other aspects too. Showing interest, gratitude, appreciation, signing petitions, writing letters are all a part of it.
       
      • Agree Agree x 1
    29. Rajin

      Rajin Member Benefactor

      Location:
      PA
      Tinnitus Since:
      9/7/17
      Cause of Tinnitus:
      Hearing loss ,noise
      Allan, I'm trying to donate but it is asking for too many details.

      Should be just Name and Payment.

      They want your postal address.

      People don’t want to go thru a lot of information when they donate.
       
      • Agree Agree x 1
    30. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Ok here are some random thoughts based a lot on my experience working on the research and development side in consumer healthcare. I do not have an education in Marketing, if anyone on the site does please understand this may not be the perfect analogy and feel free to jump in anytime-

      When a healthcare company moves into a new market with a new product the first type of consumer advertising you will see can be more educational in nature rather than entertaining. That's not to say it's boring either. Usually the "education" aspect is about the condition for which the product is intended. As the market becomes educated about the condition and how the product works, people begin to realize they need to buy and use this product. At this point there are coupon drops, sale prices, floor stands etc. Once a market matures and sales reach and maintain a critical level, the adverts may change and become more entertaining.

      Marketers also get to know the consumer very well. They use qualitative research, have focus groups to test out new concepts, new adverts, etc. For some products, emotional aspects are key. An example might be for a laundry detergent that makes your bath towels soft and fluffy. Used to be that adverts would show a 2 stacks of the same number of folded towels. Of course the stack that had been washed with soft and fluffy detergent was 10% taller than the other stack washed in a competitors detergent. Claims with numbers like 10% more loft are considered to be strong claims and need good research to back them. However, marketers found what really resonated for mothers was to appeal to the emotional aspect by showing how happy a baby was wrapped in the soft and fluffy towel. And sales increased as a result.

      I'm not a marketer, so I'm probably not explaining as well as one could, but I think you get the picture. If there are others on Tinnitus Talk with marketing experience PLEEEZZ help me out!

      So, based on that-
      1. Question- how well do we know the tinnitus community?
      2. Do they know why they should donate to research?
      3. Is there a difference between donating regularly and donating to a fundraiser?
      4. How does donating work? Are there different avenues to follow? Donate to ATA or BTA vs directly to the researcher
      5. Does the current message resonate with them?
      6. Where will we message the community? Where are they and how will we reach them? (Online, in-person support groups, radio, TV?)
      7. Will we measure results? How?
      8. How will we reinforce the donating behaviour?
      Keep in mind we can't nor do we want to address all these items at once, which I think has been our expectation leading to our disappointment and frustration with the results.

      For Question 1- I have only observed the online community. Several times I have seen fundraising requests posted on Facebook Pages, by myself or others, which generates many Likes and a few comments but no donations. Other times I've seen a fundraiser posted on a Facebook Page where tinnitus community members flock to the site and start jabbering away about their tinnitus. I don't think they even realize the point of the post was to ask for a donation and no donations result but the jabbering continues. So right there, something has gone wrong. Thoughts on how to avoid this or deal with it once it happens?
       

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