Donating Money for Tinnitus/Hearing Loss Research

[Vinnitus]

After being around here for some few months now, I figured that instead of sitting on my bum waiting for the much fabled "habituation" to happen, I might as well do something constructive to the benefit of all Tinnitus sufferers.

I'm considering donating some money to a deserving party in the field of solving this horrible affliction. Considering it's even harder now to acquire money than before Tinnitus popped up it's ugly head, I have some requirements. I would like to donate to a party that:

• Focuses on CURATIVE research rather than developing managing techniques. I think, while the managing techniques might help for some, it is a waste of money better spend on actually making progress. The good news coming from this has a much higher therapeutic value to me than e.g. TRT could ever provide.
• Doesn't just reel in money to feed their board members, but does actual research and not just maintaining the status quo (this one might be tough to determine).
• Has the best chance to deliver results/breakthrough on the shorter term rather than the longer term (might also be tough to determine).

As far as I know, there are five "big" parties active in the field, of which the first three sound promising.

• Action on Hearing Loss.
• Hearing Health Foundation.
• Tinnitus Research Initiative.
• ATA.
• BTA.

Did I miss any? Thoughts or ideas? Also, please state what your thoughts are about contributing to this cause.

 

[Ears Hurt]

I am a donor to Action on Hearing Loss. I tend to support both Action on Hearing Loss and Hearing Health Foundation.

 

[Zug]

After being around here for some few months now, I figured that instead of sitting on my bum waiting for the much fabled "habituation" to happen, I might as well do something constructive to the benefit of all Tinnitus sufferers.

I'm considering donating some money to a deserving party in the field of solving this horrible affliction. Considering it's even harder now to acquire money than before Tinnitus popped up it's ugly head, I have some requirements. I would like to donate to a party that:

• Focuses on CURATIVE research rather than developing managing techniques. I think, while the managing techniques might help for some, it is a waste of money better spend on actually making progress. The good news coming from this has a much higher therapeutic value to me than e.g. TRT could ever provide.
• Doesn't just reel in money to feed their board members, but does actual research and not just maintaining the status quo (this one might be tough to determine).
• Has the best chance to deliver results/breakthrough on the shorter term rather than the longer term (might also be tough to determine).

As far as I know, there are five "big" parties active in the field, of which the first three sound promising.

• Action on Hearing Loss.
• Hearing Health Foundation.
• Tinnitus Research Initiative.
• ATA.
• BTA.

Did I miss any? Thoughts or ideas? Also, please state what your thoughts are about contributing to this cause.

Tinnitus Talk

 

[attheedgeofscience]

Did I miss any? Thoughts or ideas?

You could also donate to TinnitusTalk by becoming a benefactor. Certainly, in the past, TinnitusTalk has enjoyed pretty high ratings on the social media (i.e. ratings:follower-ratio) compared with other similar organizations. See for yourself. So money well spent by donating to TT if you ask me.

Thoughts? If each and every person who visits TinnitusTalk would donate just one dollar annually, there would be more than one million dollars to create awareness with. "One dollar" should be a manageable donation for just about any individual.

Also, please state what your thoughts are about contributing to this cause.

Most of the organizations you list do a decent job with the means they have. On the whole, they could perhaps focus slightly more on the social media angle (than they currently do).

The problem is that they have too little money to play around with. The reason non-profits have too little money is because 1) tinnitus sufferers do not donate nearly enough and 2) health authorities do not take it prioritize it. And so with that in mind, tinnitus most likely will not enter the spotlight until a sufficient critical mass of the younger population starts to be affected by it and in such a way that it affects not only themselves but also society as a whole (i.e. "cost to society").

So... don't expect anything too exciting to be happening in the near future. It will be a slow process where the "pain" slowly develops over time until - perhaps - tinnitus starts to become a sufficiently big problem to "everyone" (as a result of the "iPod generation"). Of course when and if that happens, the average health professional will be powerless (and clueless) as to what to do. You cannot really expect much else from public servants.

 

[Markku]

Tinnitus Research Initiative is one worthy of support:

http://tinnitusresearch.org/index.php/about-tri/donations​

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.​

 

[Samantha R]

@Markku thanks for that information. I'm going to set up a regular monthly donation.

 

[Rubenslash]

https://hearinglosscure.stanford.edu/

I believe that ATA, BTA etc waste a lot of money on overhead costs (only about 50% of donations goes to research) and stuff like 'CBT', 'TRT' etc. Better directly donate to researchers.

 

[lymebite]

For people with hyperacusis, Hyperacusis Research is the only non-profit dedicated to that affliction.

Funds are desperately needed because there is very little research to find therapies for hyperacusis. As woefully underfunded as tinnitus is, the situation with hyperacusis is even more challenging.

Donations can be made online and are tax-deductible as allowed by law:

http://hyperacusisresearch.org/donate-to-hyperacusis-research/

 

[Daniel Kiss]

Hi everyone,

I would like to start donating for an organisation that tries to find a cure too and I see a lot of suggestions but I'm still hesitant because I don't see proof.

I think we as the sufferers of these incurable illnesses should find out where we should donate to best help our cause and we should all donate to a selected few organisations that have the best chance of finding a cure.

Anyone interested helping me with this?

 

[Paul10]

Can't we just bombard Bill Gates with e-mails and snail-mails to pump a billion dollars into research? What a billion dollars to the richest guy on earth!

 

[Bidyut saha]

Wish to donate but no way really

 

[InfiniteLoop]

I have just donated some money to the Hearing Health Foundation.

I would like to know other organizations that Tinnitus talk members think are doing good research for tinnitus/hearing loss. ATA and similar are a possibility.

 

[Frédéric]

Since the onset of my tinnitus, I did not manage to find a reliable organization to donate. Everytime it is the same thing: you cannot choose the research program to support, you cannot even choose to support a research program rather than an awareness campaign.

Every year, I renew my registration of 40 euros to France Acouphènes, the French equivalent of the American Tinnitus Association, but I have the impression that the contributions of all the registered persons are mostly involved in the running costs of the association, and that this organization has no money left to fund the research.

Anyway, it is out the question that my contributions are wasted in an umpteenth useless study about "the correlation between tinnitus and anxiety" (correlation several times demonstrated, we must go to the next step) or on a "therapy" like Progressive Tinnitus Management (we need a real cure, not a management program).

 

[GregCA]

Since the onset of my tinnitus, I did not manage to find a reliable organization to donate. Everytime it is the same thing: you cannot choose the research program to support, you cannot even choose to support a research program rather than an awareness campaign.

Every year, I renew my registration of 40 euros to France Acouphènes, the French equivalent of the American Tinnitus Association, but I have the impression that the contributions of all the registered persons are mostly involved in the running costs of the association, and that this organization has no money left to fund the research.

Anyway, it is out the question that my contributions are wasted in an umpteenth useless study about "the correlation between tinnitus and anxiety" (correlation several times demonstrated, we must go to the next step) or on a "therapy" like Progressive Tinnitus Management (we need a real cure, not a management program).

I've also stopped contributing to the American Tinnitus Association for similar reasons.

WRT FA: I tried to sign up on the France Acouphènes forum many times, but each time the system tells me that my account needs to be activated by an administrator before I can use it... and that part never happens (I'm not sure what they need to check: email validation is automatic these days).

It is indeed annoying to not be able to cherry pick the specific projects we want to sponsor. I'm less interested in funding coping methods than a cure, so I want to be able to direct my donation money towards the latter and not the former.

 

[david c]

From a British perspective I would strongly advise not to donate to Action on Hearing Loss if funding tinnitus research is your primary concern. It does almost nothing for this and has wasted lots of money on buying an expensive new "trophy" headquarters in an expensive area of London. Equally the British Tinnitus Association spends very little on actual tinnitus research as opposed to duplicating "research" on "management strategies". Probably something like the Tinnitus Research Initiative is your best bet.

 

[lapidus]

Yes, Tinnitus Research Initiative and Hyperacusis Research Organisation are the best ones imo.

 

[Zug]

When I was more active here there was a lot of talk about "How researchers are clueless", "ATA is useless" and so on.

ATA sent an e-mail about the much publicized Michigan study, and they gave money to research on the subject in 2011. So, if you need proof that your money is put to good use. It is here.

I must say that a lot of people talking about "science", complaining about its usefulness, etc. Didn't have any real world experience on the subject. Research is a messy endeavor and takes time, but the efforts add up.

So please, donate to ATA, TRI, TinnitusTalk. Even if it's a couple of bucks here and there. It does make a difference.

Best,
Zug

--\\--

Researchers at the University of Michigan recently published results in Science Translation Medicine on a unique tinnitus treatment device aimed at resetting nerve activity in the brain to quell the phantom sounds of tinnitus. The paper reports encouraging results from the first animal tests and a small clinical trial with 20 tinnitus patients. Study details can be read here. A concise news report can be found at: https://labblog.uofmhealth.org/lab-report/first-test-specially-timed-signals-ease-tinnitus-symptoms.

The team of researchers, led by Susan Shore, Ph.D., at the Kresge Hearing Research Institute – a part of the Department of Otolaryngology at Michigan Medicine – built on research that had its origins in a 2011 ATA grant for "Somatosensory Influence on Physiological and Behavioral Correlates of Tinnitus – Towards an Effective Technique for Alleviating Tinnitus." (Read past ATA funded research).

The research explored fusiform cells and their role in tinnitus perception. Funding was continued by such organizations as the National Institutes of Health (NIH) and the Coulter Foundation.

The current experimental device, which is not commercially available, is aimed at a particular type of tinnitus sufferer: those who can temporarily alter their tinnitus symptoms by clenching their jaws, extending their tongues, or turning or flexing their necks. The next round of research, which is being funded by the NIH, is expected to begin late summer.

Recruitment for the clinical trial is expected to begin early 2018. Information will be available on Clinicaltrials.gov six months prior to the start of the trial. For more information on the trial, email: tinn.trial@umich.edu.​

 

[gadsie]

I made a similar thread before when I wanted to give a little bit out of my own pocket. After my dad was recently struck with sudden hearing loss and tinnitus I want to go bigger. I plan on selling grilled cheese sandwiches outside my university library and donating profits to hearing loss and tinnitus research.

@Contrast pointed me towards Charles Liberman's research on hidden hearing loss, and part of the profits will again go to him.

However, I wonder if there are any other projects that are promising, perhaps tackling other angles. I honestly know very little about the ear, so I don't know if there are other things than hair cell and synaptic ribbon damage that cause hearing loss. This is also a bit of a "selfish" endeavor because my dad's hearing loss is likely caused by an infection, so if anyone knows something about that, I'd love to know too. Thank you!

 

[TuxedoCat]

However, I wonder if there are any other projects that are promising, perhaps tackling other angles. I honestly know very little about the ear, so I don't know if there are other things than hair cell and synaptic ribbon damage that cause hearing loss. This is also a bit of a "selfish" endeavor because my dad's hearing loss is likely caused by an infection, so if anyone knows something about that, I'd love to know too. Thank you!

Hi @gadsie, If you take a look at Worthy Causes there are a few organizations and researchers listed there along with summaries and links. Charles Liberman is listed under Massachusetts Eye and Ear infirmary. When you donate, just be sure and indicate you want the money to go to Dr. Liberman's research.

Dr. Josef Rauschecker is at Georgetown University and is studying the role the limbic system in the brain plays in generating and maintaining tinnitus. He's also done a Tinnitus Talk Podcast. His research if definitely on the cure path. I have donated to his research and so have others on the Tinnitus Talk forum.

Another "favorite " of members of Tinnitus Talk is Dr. Thanos Tzounopoulos at the University of Pittsburgh. He currently has grant money from the US Department of Defense and is working on a pharmacologic agent for tinnitus. The fact that the Department of Defense is supporting his research is a good sign that his research has been reviewed and found to be worthwhile.

If you have any questions as you go thru the possibilities, I'd be happy to answer any questions or help find the answer.

Thanks for donating to research!

TC

 

[Tinniger]

• Action on Hearing Loss.
• Hearing Health Foundation.
• Tinnitus Research Initiative.
• ATA.
• BTA.

Did I miss any?

A German counterpart to ATA and BTA is the "Deutsche Tinnitus Liga", which is rather a self-help association than a research initiative. https://www.tinnitus-liga.de/

 

[tianqi zou]

Since lack of funding is one reason that make the progress slow and there is a few of tinnitus organizations, I am wondering which organization is efficient on funding cure for tinnitus so that I can start my monthly donations. Thank you.

 

[david c]

I'd avoid donating to the BTA and ATA if I were you. The BTA I know more about as a British member and know that they have not been funding research into a cure nor have they been keeping their members informed about important consultations about tinnitus care in the UK. I know much less about the ATA but many American members here seem to be less than impressed with them.

If you are in the lucky position of having money to donate two worthwhile causes would be the Tinnitus Research Initiative and Tinnitus Hub (the main organisation behind Tinnitus Talk) which is doing useful research, particularly collecting data about tinnitus sufferers' experiences and responses to different therapies.

 

[Autumnly]

Since lack of funding is one reason that make the progress slow and there is a few of tinnitus organizations, I am wondering which organization is efficient on funding cure for tinnitus so that I can start my monthly donations. Thank you.

• Dr. Rauschecker's Tinnitus Research, Georgetown University
• Prof. Tzounopoulos, University of Pittsburgh
• Hearing Health Foundation
• Tinnitus Talk
• Tinnitus Research Initiative