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

[TuxedoCat]

The apathy you describe is utter insanity.

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.

 

[Bill Bauer]

This suggests that people just aren't prepared to back anything that increases our chances of something good happening.

The problem is that my donation will NOT be improving our chances.

If we all continue to think like Bill Bauer than nothing will ever change.

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.

 

[Allan1967]

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.

15 million people donating will though Bill. See the bigger picture.

 

[coffee_girl]

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.

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.

 

[JohnAdams]

The loss left a gap in the tonotopic map in the auditory cortex and other neurons filled in the gap.

How do you know that?

 

[Ed209]

The problem is that my donation will NOT be improving our chances.

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.

 

[TuxedoCat]

How do you know that?

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

 

[Bill Bauer]

15 million people donating will though Bill. See the bigger picture.

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.

 

[Allan1967]

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.

I know what you're saying, but we need a global awakening.

 

[TuxedoCat]

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?

 

[Red]

The apathy you describe is utter insanity.

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.

 

[Allan1967]

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.

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.

 

[Allan1967]

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.

Precisely. Good to see I'm not the only one who gets it.

 

[JohnAdams]

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

If hearing loss caused tinnitus, restoring hearing will probably fix it. Frequency Therapeutics will know this by December.

 

[TuxedoCat]

If hearing loss caused tinnitus, restoring hearing will probably fix it. Frequency Therapeutics will know this by December.

That's not far off-awesome! Thanks, John.

 

[TuxedoCat]

Precisely. Good to see I'm not the only one who gets it.

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

 

[Jazzer]

commiserate with @Jazzer

.......meaning what exactly.......?

 

[Markku]

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.

Indeed:

 

[Red]

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.

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.

 

[Manny]

Indeed:

View attachment 23626

Nice. Where's this graph from?

 

[Markku]

Nice. Where's this graph from?

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:

 

[Markku]

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

OK, I found it on Tinnitus Talk

British Tinnitus Association — Annual Tinnitus Research Review 2016

See the attachment in the first post.

And the graph is on page 5.

 

[Red]

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.

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.

 

[Samir]

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.

 

[Bart]

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.

 

[Greg Sacramento]

The only reason it did so was because of those rich people

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.

 

[JohnAdams]

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

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.

 

[Ed209]

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.

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?

 

[Greg Sacramento]

@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.

 

[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.

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.

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

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.