Why Is There a Big Deficit in Funding Tinnitus Research?

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.

 

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 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.

 

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

 

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

 

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.

 

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

 

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

 

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

@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.

 

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.

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

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

 

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).

 

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.

 

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).

 

@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.

 

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).