Why Is There a Big Deficit in Funding Tinnitus Research?

[Dizzyhead888]

I am not fully following tinnitus initiatives, so my comment may come across as ignorant.

I am aware that there are many fundraising initiatives taking place, but the reality is that those fundraisers will take forever to provide enough funds for such a difficult problem. I read that the NIH gives $3m to tinnitus research for 50m Americans who have it vs significantly more millions of dollars for other illnesses ($900m for 5m Alzheimer's patients).

Shouldn't funding tinnitus be much straightforward given that this issue afflicts many wealthy people, especially celebrities/musicians.

1. Did we reach out to big foundations for donations?
2. Did we reach out to the musicians/celebrities (which are likely rich) with tinnitus for donations? Those are the ones that can mostly relate to our pain, and would be keen to donate millions, which would outdo any funding campaign.

 

[Phendran]

I wonder about this often.
I think one of the big problems is that there are too many people with tinnitus that keep on living in similar ways to how they used to, without it affecting anyone else but themselves. As such, tinnitus is not seen as a debilitating ailment.

Another thing contributing to tinnitus not being taken seriously is that some people that have tinnitus have it in a mild version, and then they can say "Yeah, I got tinnitus, but I shrug it off. I can put on the TV or a fan or something and it's fine." These kinds of statements make regular people think "Oh, okay so tinnitus isn't actually very bad then".

 

[Tinker Bell]

@Phendran is absolutely right. While an estimated 50 million Americans have tinnitus, only two million have cases they consider extreme or debilitating.

Every case of Alzheimer's disease is or will eventually become extreme or debilitating. No one habituates to Alzheimer's. Are there even any cases of it going away?

It is estimated that 90 percent of Americans with tinnitus have hearing loss. I am not sure the numbers, but research efforts are underway regarding hearing loss. Plus, advancements in hearing aid technology could be beneficial. Of people with hearing loss (with or without tinnitus), about 80 percent benefit from hearing aids.

Looking at it from the perspective of overall research regarding hearing, there likely is quite a bit invested in helping 90 percent of tinnitus sufferers.

 

[Onsdag]

some people that have tinnitus have it in a mild version

MOST people have it in a mild version, not some...

 

[Phendran]

MOST people have it in a mild version, not some...

Aren't most people "some" people? As in an unspecified amount of people?

 

[Phendran]

Looking at it from the perspective of overall research regarding hearing, there likely is quite a bit invested in helping 90 percent of tinnitus sufferers.

May that help come sooner rather than later. Two million Americans is a lot-lot of people, and together with those suffering from T in Europe, there'll likely be a sizeable portion of people worth saving.

 

[Alue]

With few exceptions, the only people that really care about tinnitus research are the ones with bothersome tinnitus.

 

[Dizzyhead888]

@Markku
Hi Markku wanted to get your feedback on the post

 

[Greg Sacramento]

I wonder about this often.
I think one of the big problems is that there are too many people with tinnitus that keep on living in similar ways to how they used to, without it affecting anyone else but themselves. As such, tinnitus is not seen as a debilitating ailment.

Another thing contributing to tinnitus not being taken seriously is that some people that have tinnitus have it in a mild version, and then they can say "Yeah, I got tinnitus, but I shrug it off. I can put on the TV or a fan or something and it's fine." These kinds of statements make regular people think "Oh, okay so tinnitus isn't actually very bad then".

@Phendran That is the "Catch 22" which I also had discussed in the past.

I am not fully following tinnitus initiatives, so my comment may come across as ignorant.

I am aware that there are many fundraising initiatives taking place, but the reality is that those fundraisers will take forever to provide enough funds for such a difficult problem. I read that the NIH gives $3m to tinnitus research for 50m Americans who have it vs significantly more millions of dollars for other illnesses ($900m for 5m Alzheimer's patients).

Shouldn't funding tinnitus be much straightforward given that this issue afflicts many wealthy people, especially celebrities/musicians.

1. Did we reach out to big foundations for donations?
2. Did we reach out to the musicians/celebrities (which are likely rich) with tinnitus for donations? Those are the ones that can mostly relate to our pain, and would be keen to donate millions, which would outdo any funding campaign.

@Dizzyhead888 I agree, but there is ways to get all the money needed from billionaires. I had success with that for other causes several years ago. If I didn't have severe T, I could raise a lot of money myself. So with T, I need assistance. I can't travel if needed.

I don't have the knowledge to tell research 'start ups' who they should partner with. Marrku, a good person wanted to know why I didn't make an alert about the Pineapple fund recent giving.

 

[Markku]

Hi Markku wanted to get your feedback on the post

It boils down to several things I suppose, and I'm no expert at analyzing them in detail, but some random speculations, most of which have already been mentioned above:

• A lot live with it fine, and even those who initially struggles significantly can feel much better soon enough. Donating to tinnitus research is not something that even crosses most people's minds, or they shrug the thought off by thinking "oh well, someone else will donate, I can go buy a Big Mac instead", or "I could only give $10, it doesn't help anything, so I won't bother with even that."
  
  
• Tinnitus is not something many people want to share or talk about with their friends and online buddies. This is abundantly clear from the lack of social media engagement. It's very difficult for a person to click that share button. Maybe they think they don't have any friends who would be interested, or maybe they feel uneasy about sharing about their tinnitus (knowing how difficult it is for healthy people to really understand the effects of chronic tinnitus doesn't help matters). It's sometimes difficult to talk about it with one's real life friends as well. And hence few know the struggle associated with tinnitus, except for the sufferers themselves (and hey, sometimes even those with milder tinnitus may not fully grasp what more severe tinnitus is like; after my onset, I could never have imagined the level I'd be struggling with these days - and who knows how much worse it could still get?)
  
  
• Those who struggle for extended periods of time with tinnitus, are debilitated by it, and would want to help research, they may also be facing serious financial difficulties at the same time due to not being able to work. The uncertain future may make people to save every penny for them and their family - this is quite understandable.
  
  
• About celebs: tinnitus isn't media sexy. I know for a fact (via a reliable contact I can't mention - but this information isn't that shocking!) that there are several A-list celebs with tinnitus who want to keep it private.
  —There are exceptions; William Shatner has been public about it, however in the recent years he has mostly just highlighted habituation (search for his tweets on Twitter and you'll see what I mean). I would hardly describe him as tinnitus advocate in this day and age; but many years ago it was different, when he did a video for ATA, talked about it with David Letterman, etc. Still, he does mention tinnitus once in a while, and that's more than most do - so all the kudos to him. Mark Ronson has endorsed BTA's Plug'em campaign. Unfortunately giving a quote and his face to the campaign seems to be the full extent of it; I haven't seen any mentions or awareness efforts on Mark's Twitter or Facebook. Beggars can't be choosers however, and giving the face to the campaign was very cool. Steve Martin gave $10,000 to ATA in 2013. Grimes (musician) has talked about tinnitus and how she had to cancel gigs because of it some time back. And there are of course other celebs too who have mentioned or done something else for tinnitus.
  
  
• BTA and ATA have both applied for funding - and sometimes received - from many sorts of potential sources. Of course it's sad - well, sad is an understatement - that e.g. BTA wasn't listed among the top 1,000 UK charities ranked by amount of donations a few years back...
  
  
• Ending this on a positive note: check out ESIT and TIN-ACT. It's encouraging the EU is funding these initiatives with millions of euros. There's also the LISTEN. Also the Frontiers research topic on tinnitus is in #1 place, and could very well win the research conference awarded by Frontiers. This will be known later on next year. Winning this can bring a welcome amount of awareness, and potentially help raise research activity as well.
  
  
• Another positive back story: Matteo De Nora, Team New Zealand's benefactor, who isn't much in the limelight, and his role in founding Tinnitus Research Initiative. TRI's donation page currently still states:
  "The administrative expenses of TRI are covered by the founder, therefore we can guarantee you, that your donation will exclusively be used to support tinnitus research across borders and disciplines."

Oh shoot, I kind of went off-topic here in relation to your questions, I blame my 1 hour of sleep tonight! But yes, I know the major organizations are constantly thinking of ways to raise funds for their activities/research and, besides governmental sources, foundations/celebs/mega rich etc are surely also on the list. It's far from easy though I must say, foundations can put many other health causes ahead of tinnitus, and neither is it a piece of cake for any tinnitus organization to get face time with (higher level) celebs... but, have to keep trying (maybe utilizing various approaches).

but there is ways to get all the money needed from billionaires. I had success with that for other causes several years ago.

Kind of mysterious and vague. If you aren't comfortable sharing the details in public, I would genuinely urge you to share your ways with entities like TRI, BTA, ATA, AoHL, HHF - Hyperacusis Research also, it's sorely underfunded. I don't think you would need to travel for any of that; I'm sure any of these organizations can arrange travel by themselves if there's a need and a real potential for funding.

 

[attheedgeofscience]

I am aware that there are many fundraising initiatives taking place, but the reality is that those fundraisers will take forever to provide enough funds for such a difficult problem. I read that the NIH gives $3m to tinnitus research for 50m Americans who have it vs significantly more millions of dollars for other illnesses ($900m for 5m Alzheimer's patients).

There are things going on (the following project is funded already with nearly €4 million):

Source: http://cordis.europa.eu/project/rcn/209908_en.html

And the research topic that now has amassed two million views is being used as leverage to secure more funding in other regards:

Source: www.frontiersin.org/research-topics/4725/towards-an-understanding-of-tinnitus-heterogeneity

Results that can used in clinical practice are perhaps not going to be immediate from the above initiatives, but I think that a good foundation for future tinnitus research has been established in 2017.

1. Did we reach out to big foundations for donations?

See above and follow the events from the Frontiers Spotlight Award in 2018.

2. Did we reach out to the musicians/celebrities (which are likely rich) with tinnitus for donations? Those are the ones that can mostly relate to our pain, and would be keen to donate millions, which would outdo any funding campaign.

I am not sure that musicians are on the side of the tinnitus community. See this thread for some counter examples:

www.tinnitustalk.com/threads/found-this-video-about-rock-concerts-and-hearing-damage.25743

 

[GregCA]

Tinnitus is not something many people want to share or talk about with their friends and online buddies.

I think this is key, especially at a professional level. I suspect that "coming out" publicly can actually hurt my professional career. I've had a pretty good career prior to T, but if people in my professional circles knew the extent of the struggle, they would probably never think of me for positions similar to those I had held before T: they would view it as a job liability (and I wouldn't blame them for it: I can't deny the impact my T has on my cognitive abilities & psyche).

 

[InfiniteLoop]

Totally agree with @GregCA. There is an aspect of mental illness around T, and anybody with an intrusive version of it is regarded as "damaged goods". This is a huge handicap, and most people try to keep the invisible illness just like that.

 

[Dizzyhead888]

It boils down to several things I suppose, and I'm no expert at analyzing them in detail, but some random speculations, most of which have already been mentioned above:

• A lot live with it fine, and even those who initially struggles significantly can feel much better soon enough. Donating to tinnitus research is not something that even crosses most people's minds, or they shrug the thought off by thinking "oh well, someone else will donate, I can go buy a Big Mac instead", or "I could only give $10, it doesn't help anything, so I won't bother with even that."
  
  
• Tinnitus is not something many people want to share or talk about with their friends and online buddies. This is abundantly clear from the lack of social media engagement. It's very difficult for a person to click that share button. Maybe they think they don't have any friends who would be interested, or maybe they feel uneasy about sharing about their tinnitus (knowing how difficult it is for healthy people to really understand the effects of chronic tinnitus doesn't help matters). It's sometimes difficult to talk about it with one's real life friends as well. And hence few know the struggle associated with tinnitus, except for the sufferers themselves (and hey, sometimes even those with milder tinnitus may not fully grasp what more severe tinnitus is like; after my onset, I could never have imagined the level I'd be struggling with these days - and who knows how much worse it could still get?)
  
  
• Those who struggle for extended periods of time with tinnitus, are debilitated by it, and would want to help research, they may also be facing serious financial difficulties at the same time due to not being able to work. The uncertain future may make people to save every penny for them and their family - this is quite understandable.
  
  
• About celebs: tinnitus isn't media sexy. I know for a fact (via a reliable contact I can't mention - but this information isn't that shocking!) that there are several A-list celebs with tinnitus who want to keep it private.
  —There are exceptions; William Shatner has been public about it, however in the recent years he has mostly just highlighted habituation (search for his tweets on Twitter and you'll see what I mean). I would hardly describe him as tinnitus advocate in this day and age; but many years ago it was different, when he did a video for ATA, talked about it with David Letterman, etc. Still, he does mention tinnitus once in a while, and that's more than most do - so all the kudos to him. Mark Ronson has endorsed BTA's Plug'em campaign. Unfortunately giving a quote and his face to the campaign seems to be the full extent of it; I haven't seen any mentions or awareness efforts on Mark's Twitter or Facebook. Beggars can't be choosers however, and giving the face to the campaign was very cool. Steve Martin gave $10,000 to ATA in 2013. Grimes (musician) has talked about tinnitus and how she had to cancel gigs because of it some time back. And there are of course other celebs too who have mentioned or done something else for tinnitus.
  
  
• BTA and ATA have both applied for funding - and sometimes received - from many sorts of potential sources. Of course it's sad - well, sad is an understatement - that e.g. BTA wasn't listed among the top 1,000 UK charities ranked by amount of donations a few years back...
  
  
• Ending this on a positive note: check out ESIT and TIN-ACT. It's encouraging the EU is funding these initiatives with millions of euros. There's also the LISTEN. Also the Frontiers research topic on tinnitus is in #1 place, and could very well win the research conference awarded by Frontiers. This will be known later on next year. Winning this can bring a welcome amount of awareness, and potentially help raise research activity as well.
  
  
• Another positive back story: Matteo De Nora, Team New Zealand's benefactor, who isn't much in the limelight, and his role in founding Tinnitus Research Initiative. TRI's donation page currently still states:
  "The administrative expenses of TRI are covered by the founder, therefore we can guarantee you, that your donation will exclusively be used to support tinnitus research across borders and disciplines."

Oh shoot, I kind of went off-topic here in relation to your questions, I blame my 1 hour of sleep tonight! But yes, I know the major organizations are constantly thinking of ways to raise funds for their activities/research and, besides governmental sources, foundations/celebs/mega rich etc are surely also on the list. It's far from easy though I must say, foundations can put many other health causes ahead of tinnitus, and neither is it a piece of cake for any tinnitus organization to get face time with (higher level) celebs... but, have to keep trying (maybe utilizing various approaches).


Kind of mysterious and vague. If you aren't comfortable sharing the details in public, I would genuinely urge you to share your ways with entities like TRI, BTA, ATA, AoHL, HHF - Hyperacusis Research also, it's sorely underfunded. I don't think you would need to travel for any of that; I'm sure any of these organizations can arrange travel by themselves if there's a need and a real potential for funding.

Apologies for the late response. Thank you for sharing the above. It's very clear and completely agree with all the points. Yes, the nature of the illness makes it difficult to effectively market it and potentially raise funds quickly.

What about us as TinnitusTalk emailing big donors/foundations? Success rate will be low but any success is likely to raise much more funds than other ways of fundraising.

What do you think of us putting together a uniform email with super strong arguments (economic, health, etc.) on why donating to tinnitus (ATA, BTA, etc) is a great idea. Members here can collectively input and create this email.

For example, I heard of a bitcoin millionaire looking to donate money (but I think we passed this opportunity).

 

[IvanRus]

1. Did we reach out to big foundations for donations?
2. Did we reach out to the musicians/celebrities (which are likely rich) with tinnitus for donations? Those are the ones that can mostly relate to our pain, and would be keen to donate millions, which would outdo any funding campaign.

@Markku @Samir
@Steve
In fact, you need to clearly understand. Are these concepts different - treatment of hearing loss and treatment of tinnitus.

How much is invested specifically in the study of hearing regeneration? After all, it is, by and large, an indirect investment in tinnitus, because most cases of tinnitus are caused by a decrease in hearing (damage to the hair cells or nerve).

Yes, with proper funding, all this would happen faster. Scientists in Europe, engaged in regeneration and stem cells in the treatment of hearing are openly admitted - little money is allocated. This is a big problem. This is a great help to people.

We must choose the most honest and promising companies for the study of ear regeneration and tinnitus. And also funds. Write to them.

I'm going to turn to different philanthropists, but I need specific organizations.

Also, it would be remarkable if we wrote a collective letter asking for help from billionaires and philanthropists. How can this be done technically?

Also, donate your $ 10 if you can to various organizations for tinnitus and hearing loss treatment! The only way.

 

[Dizzyhead888]

Makes sense. While ultimately this is a long process from raising money to putting it in the right place.
We need to maximise our efforts in raising money anyways as a first step.

It's a tricky process, what do we say to the donor? Donate your money to ATA or BTA or to x firm? Ultimately, those can be figured out step by step.

Cold calling, sending emails to donors is how it is supposed to be done.
I do banking. While I am not saying that its exactly the same process as asking for tinnitus donations, but it can be similar.

In a typical company sale process, we reach out to 100 investors, 70 would say no or not reply, 20 would show weak interest. 5 would show great interest, but something along the lines hinders the process. 5 are really interested and ready to invest. And this is what makes it work.

Get 5 donors to invest. You should have north of $5m donations, more than all the money the ATA had since the 80s (if I am not mistaken).