Americans: Should We Contact Our Local Congressmen About Funding for Tinnitus?

[GregCA]

The VA spends over a billion a year for Tinnitus, how much of that taxpayer money actually gets donated to research?

If I recall correctly, it's over $2B, and it goes to veterans as a disability payment & treatments (hearing aids, counseling, etc).
That's one thing that doesn't make much sense economically-speaking: over 10 years, we're talking $20+B. You would think that they have an incentive to get this addressed "once and for all" so they stop bleeding money (well, I do realize it's not exactly their money, but still). It seems if $1B was invested in research, there would at least be something found that would reduce the long term cost of this disability. I can't predict the future, but given how few options we have today, I imagine the ROI on such effort would be quite high. At best, it can cut it down to just a cure treatment, which means tons of savings for them, not to mention a much improved quality of life for those who went to war (respect).

 

[Hopeful1]

I think nobody except sufferers really cares about tinnitus... I think we should do it ourselves... Shall we all pledge 1% of everything we earn to tinnitus... I am ready to start doing it!

And everything should go to research... nothing to TRT, CBT.

 

[valeri]

Unfortunately I'm not sure they have it very bad. I saw an interview of CM where he mentioned his T, and he made it sound like it wasn't a big deal. That's not just unhelpful, it's actually counterproductive as it tells the world this condition isn't very serious.

Yes agree with you, they still continue playing music, doing concerts.....
Sure it can't be debilitating.
I only mentioned them from the point of popularity and the number of followers on social media.
It really sucks to be in 1%

 

[Markku]

Re: Chris Martin

 

[Penate]

Yeah Chris Martin, that is okay when you don't have severe tinnitus and hyperacusis like me.

I have jet engines in my ears, power transformer in my head, high pitched noise AND hyperacusis.

Tears coming out every day because of the noise. Sometimes I can't even open my eyes, never going down.

The only thing keeping me awake is my kids. But my body and health are getting worse because of the suffering, so I don't know how much longer I can do this, I'm till working in very noisy shop, no choice I need to keep going for them, I love them to much.

 

[Aaron123]

I have a comment and a suggestion.

First, it is very unlikely more money is forthcoming from the federal government. Seems unlikely that they are going to cut funding for cancer, alzheimers, parkinsons, etc for tinnitus. Hearing loss might do a bit better, but still unlikely.

Second, the Hearing Health Foundation has a "wish list" with items starting at $250 (http://hearinghealthfoundation.org/wish_list) . A place to start would be to raise money here with the intent of making a gift to the HHF. A goal to shoot for might be to fund an Emerging Research Grant ($30,000). Nine were funded this year (http://hearinghealthfoundation.org/2016_researchers). Two are tinnitus focused, but neither was funded by an organization. (Hyperacusis Research funded the single hyperacusis grant.) It might be best to start with something smaller and succeed. Partially funding an emerging research grant starts at 5,000, but there are yet less expensive options.

 

[GregCA]

Re: Chris Martin

Thanks for the video... there's something a bit strange about his behavior actually. I don't know him personally so I don't know if that's a typical behavior for him, but he seems a bit "out of it".

I don't quite understand what his ear plugs do for his T. As a musician, it's pretty common to have in-ear-monitors and I'm sure he has quality custom-molded ones, but I don't know what they do to deal with his T. Maybe I misunderstood, but blocking outside sound doesn't really help with T.

If I didn't know anything about T (and in particular intrusive T) I would not be very moved by this interview. It sounds like it's no big deal to him, and that some "herbs" and a bit of mental trickery is all it takes to deal with it. The interviewer himself doesn't seem to think his own T is an issue.

I stand by my statement that it's a disservice to disabling-T sufferers, unfortunately.

 

[valeri]

Re: Chris Martin

Chris Martin you ignorant f..k!

 

[Dana]

1.

I just talked to the Prof. Thanos Tzounopoulos. He's the one who's trying to run a clinical trial for the SF0034. He told me he's only waiting for the government to start a trial. I sent thousands of emails to the White House.

professor Thanos who want to help us. He told me last week the SciFluor lab have SF0063 and RL-84, no clinical trial in 2 years because of not having money, when they start receiving 1000 e-mails every day, maybe they do something.

2.

they (VA) spent 1 million on research in 2009 and 1.1 billion on disability.

don't count on the VA

If both pieces of information are correct, I do not get it. There is a contradiction here.
The VA has money but they do not help prof Thanos? On what researchers they spent their 1 million? I learned from a video of a researcher that there aren't that many researchers groups and he was talking about the collaboration of those groups as a "brilliant, recent idea"

 

[valeri]

If both pieces of information are correct, I do not get it. There is a contradiction here.
The VA has money but they do not help prof Thanos? On what researchers they spent their 1 million? I learned from a video of a researcher that there aren't that many researchers groups and he was talking about the collaboration of those groups as a "brilliant, recent idea"

Good question Dana!
It's not really that there's a crowd in tinnitus research.
It's not a secret that a lot of money simply gets wasted on "does drinking water make tinnitus worse" sort of projects!