How Is It Actually Going For ATA?

Karl

On your advice went out bought the damn book, very informative, use it like my bible to my soul has calmed me down somewhat since I've started reading it, continue to use it as my reference guide. Still have the noise but learning to deal with it. And looked into the Widex hearing aids you had mentioned, My hearing is fine a little loss on the highs, so it makes no sense to buy hearing aids at 3500$ when my iphone can provide similar effects, using Jasterboffs idea of mixing and blending.

Thanks for your help be well !
Danny

 

Hi Danny.

I agree, the TRT book is a tinnitus bible. Very structured.

I suggest you also look at the current postings about how to make a do-it-yourself Acoustic Neuromodulation CR track. These guys are doing some interesting stuff, making their own MP3 files to listen to. A year ago I did something similar, with some success.

- Karl

 

ATA does fund neuroscience. Dirk De Ridder, a preominent tinnitus researcher and neuroscientist, is a member of ATA's scientific commitee. James Chinnis, who has done neural modelling on computers since a long time, is member of the board of directors. Research from De Ridder, Berthold Langguth and other neuroscientists has been funded by the ATA. Lannguth has even recieved a special grant entirely funded by a backer who was impressed by his work.

Have a look at this: http://www.ata.org/research/ata-funded

 

Thanks for showing this. Since I dropped my ATA membership I haven't been checking on the research they've been funding.

I just finished reading this paper, and my opinion remains the same: The ATA's research budget, with $10K - $50K grants, is anemic. Many of the papers are premised on hypotheses which almost infuriate with implausible mechanisms about the cause of tinnitus. But I have to admit that I'm impressed with some of these studies being done in the Netherlands with TMI.

Again, for "Step A: The Cause of Tinnitus", nobody can agree and even get that right.

In last summer's ATA's magazine I read a statement by Dr. Leslie Dalton, that tinnitus is caused by a binaural imbalance. I think it's that simple. Just a simple auditory neural circuit that becomes imbalanced at some frequencies. The imbalance can be due to hearing loss, or also be caused by somasensory input introduced into the auditory system.

What I would really like to see is big time neural network modeling. Not this $10 K-$50 K piddly stuff, which is all tilted toward a researcher's prejudices. I would like to see a non-biased computer neural network simulation of the auditory system built, without assumptions about the cause of tinnitus. Something that can be tested like a television set, where tests could be tried. With something like that they could test the effects of imbalanced hearing loss on one side or somasensory input introduced into the system, etc. and define exactly what tinnitus is.

Again, there are people out there who know how to do that kind of stuff. It's just a matter of finding these people and hiring them to do that type of research.

 

I'm back to this topic again, because I have an agenda. I want to share this, again, and keep pounding away at this idea. Perhaps somehow this idea will gain just a little more kinetic energy.

All of us with tinnitus are asking "What is causing this sound?". When I got it, I couldn't make sense of it. Most of the explainations that I read made no sense to me. Then I came across a statement made by Dr. Leslie Dalton, about the delicate balance of our auditory system, and how hearing loss can make the system imbalanced, resulting in tinnitus.

I began studying the auditory system, trying to make sense of Dalton's statement. I learned that our brains are composed of neural networks - systems that evaluate and interpret input from our senses. Neurons are a lot like wires, carrying synaptic currents. There is no difference in a nerve that carries information about a leg muscle than a nerve carrying information about sound. The only difference is the pathways of neurons. In our auditory system, nerves are "tonotopically mapped" to cochlear hair cells. Put another way: A 4KHz nerve is connected to a 4KHz inner hair cell on the cochlea.

(To view the below images, you'll need to log on to Tinnitus Talk) The below diagram shows the auditory system and the organs involved. Note the lateral efferent nerve connecting to the afferent nerve. That is the culprit in question:

That paticular lateral efferent connecting to the afferent is what some researchers have hypothesized is causing the tinnitus sound that we hear. When the inner hair cells are lost, the current from the lateral efferent is being "heard" by the afferent nerve. I think it's that simple.....Trouble is, they can't yet prove this idea in the lab!

The below is from an MIT book by John Guinan, stating the current understanding of this efferent nerve:

Last year, I attempted to push the ATA toward researching this idea. I submitted a paper to the ATA's technical committee, yet I didn't hear anything back.

I have also contacted the top researchers in this field at Harvard and the Rockefeller Institute. Two of these researchers said this idea make sense. One said that other researchers have also hypothesized about this mechanism is "The Cause" of tinnitus. However, the problem is proving this theory in the lab. In order for this concept to be proven, researchers will need to measure the voltage on an efferent nerve leading back to the ear. So far this has been very difficult to do.

I'm not alone thinking this is "The Cause" of tinnitus. Whether it's right of wrong has yet to be proven. However, there appear to be laboratory difficulties proving the idea. Or perhaps no one has tried yet. I can't find any research papers about this simple concept.

 

I grit my teeth whenever I see donation money being thrown at counseling and habituation.

 

Karl I really think your idea has alot of merit. Keep at it!

 

To date, the ATA's only funding victories has been advocacy efforts targeting Congress and the Department of Defense. Tinnitus is now a major cause of disability among the military, and so the government has a vested interest in helping cure the disease.

Over the past several months, I've read posts from ATA members and examined information offered on their website. From this exploration, I humbly offer the following insights into the ATA:

1. They genuinely want to cure this disease.
2. They are clueless about networking, and pursuing other avenues to raise money.
3. They don't understand what motivates people to donate to charity.

Regarding the latter two, what has the ATA done to network with tinnitus communities? I don't believe they have high visibility in the academic community. They admit themselves there's only a few hundred researchers who care about this disorder. (I believe the number is in the 300s. And that's the international number.) Why is this? For over forty years, the ATA has promoted research, yet gained so few MD and Ph.D. advocates. What's the disconnect? Perhaps, it's a lack of networking and fundraising. This would explain why the ATA's research grants are, frankly, embarrassing. Without the funds, how do you sponsor research?

What about the medical schools? What have they done to interface with medical students. And what have they done to update the curriculum on tinnitus? Is the ATA promoting tinnitus prevention methods to the heads of the otolaryngology departments? Why aren't medical students being taught to aggressively treat trauma-induced tinnitus? (Age-related tinnitus, or presbycusis, may require different treatments.) Anti-inflammation treatments, like intratympanic steroid injections and prednisone, are given for various ear conditions. People with trauma-induced tinnitus need to stop the inflammation and thereby prevent or minimize hair loss/nerve damage.

What about the audiologists? Do you know that few audiologists will treat people with tinnitus? Of those that do, not many possess adequate training to help tinnitus sufferers. My own audiologist, for example, truly wants to help people with tinnitus and does offer hearing aids and sound devices. That said, in my numerous conversations with her, it is surprising how little she knows about tinnitus--even from an audiological perspective. She also exemplifies the ATA's failure to reach the audiological community. Though a member of the ATA, she says they are really "a bunch of old men," and that's why they do so little. She believes tinnitus research is more of a hobby to the ATA than a mission.

What about the public? What wide scale public outreach program has the ATA launched? I know they have many fundraisers for members, but what about the general public? Or even target groups--like seniors? Why not network with AARP? Why not offer a trial ATA membership for AARP members? The same could be done for musician organizations and other at risk populations? Why have I never seen a PSA (public service announcement) on tinnitus, even during Tinnitus Awareness Week? How aware can you be when you have to visit the ATA's website or facebook page to learn about the promotion?

But I am aware that the ATA perceives tinnitus as "a hard sell." Why?

• It's not cute and cuddly. (Most people who get tinnitus are older, after all, but the young are probably the fastest growing group!)
• If you don't have tinnitus, you don't understand how intrusive it can be.
• Most tinnitus is not intrusive and/or resolves on its own within six months.
• Even people with intrusive tinnitus may learn to habituate.

Given these obstacles, the ATA believes there is only one group they should target: people with intrusive tinnitus that remain bothered by the disease--whether or not they habituate. That group, by the ATA's estimates, is perhaps one percent of tinnitus sufferers. Does focusing on this group make sense? How much money can this group reasonably be expected to donate? (Given the demographics, i.e., the elderly, probably not much.) Even if a plethora of wealthy individuals were afflicted suddenly with intrusive tinnitus, and they "somehow" stumbled their way onto the ATA website, why would they donate? Wealthy people want their donations to have impact. Money well spent. What does the ATA's research resume offer?

The ATA would be better served by networking with professional communities, building up their membership base, gaining recognition as a charity worthy of donations, networking with other hearing-related charities, soliciting funds from institutions and institutional donors, and only then asking members to help "self-fund" their own disease.

Perhaps, I'm being too critical of the ATA. They truly want to help. But they just seem so clueless.

And so they only garner one star on the Charity Navigator. (http://www.charitynavigator.org/)

 

For those who do not know Soundcure (http://www.soundcure.com/) is the corporate sponsor of the ATA. They are a business that makes it money from selling tinnitus relief products. If Tinnitus was cured their customer base would cease to exist so to me that raises questions as to their motivation for helping to find a cure. Where is the motivation to eliminate your current and future customers and put yourself out of business? Yet this company is the ATA's corporate sponsor?


A quick history of Soundcure, they were formed in 2009 after they were created by Allied minds who invested in the technology after it was developed by the University of California institute which was funded by..............The ATA!

For me anyway this raises alot of questions about the organisation. Interestingly as well Soundcure is also the corporate sponsor of the BTA (British Tinnitus association) too.

 

I did talk about these things with an ATA director. What i can gather is:

The soundcure adverts you can find on the ATA website and the de facto endorsement are a plain violation of ATA policy. This will be discussed.

So are some crackpot comments from a physician about gingko of homepathy which "can help". On their website.

Most people who donate to the ATA cease to donate after a time. Probably because most people cease to care about tinnitus after a while. A commonly cited threshold would be two years.

You cannot compare tinnitus charities to the well established cancer or deafness ones. If few people donate for a cause, the (fixed) administrative costs will be proportionally higher. It is unavoidable.

And some more personal comments.

The only thing we can DO in regard to the ATA (or the TRI) i giving money or just do nothing and whine. Nobody will come to our rescue. If we stand on the sidelines, finicky over the low standing of the tinnitus charities, nothing will happen.

Tinnitus is a complex neurological phenomenon. Studying it implies lots of complex and sometimes pure research. LOTS of very qualified man-hours. It is a long term ride. It is too early to expect productive applied research. And i for one would like to see ENTs kept as far as possible from a subject (neurology) they understand jack about.

Being from a science/engineering background, i thought physicians were people well informed in the latest treatments and research. Because that was what my engineer and scientists friends would do: read a lot about research in the subject they are interested in. I was utterly wrong. I experienced first hand physicians unable to do a simple pubmed search, spouting cheesy philosophy and regurgitating dogma. Even some of those who come at the TRI conference whine about them being "too theorical". We have to accept that physicians are not -in general- scientists nor intellectuals. So most of them are fur us dead weight. Even if some experimental treatment give partial results somewhere we shouldn't expect it to percolate quickly as most physicians would not scan recent research nor are able to understand it. If someone knows how to network with not so-keen-on-science physicians without spending mountains of money i am all ears.

There have been recent developments in the financing of pure research in neuroscience. New models and new tools (think data processing from brain imagery) will come. At the same times, a few TRI clinics are pioneering brain data collection from tinnitus patients. Long term wise we should expect novelty on how tinnitus is investigated. Recent research has been possible only thanks to past advancements in basic neuroscience.

My two cents.

 

I find it very confusing how the ATA could violate it's own policy like this for such a long period of time? This is not some simple oversight.

Even the name 'Soundcure' is an insult to Tinnitus sufferers because it doesn't 'cure' anything

 

Firstly I want to say thank you to the creators for making such a wonderful Tinnitus forum. By far the best on the Internet!

Today I joined that awful Yuku forum this morning to highlight a few points about the ATA and correct an error that was made. I haven't done so on Tinnitus talk yet because others are doing such a good job on the ATA already! Well I was banned for simply stating my ATA views and I had not violated any of the rules as they were written on the home page. Maybe the owner of that weird place is on the ATA's payroll and/or maybe Peter G was offended when I called Yuku 'small fry' compared to this place! Dr Stephen Nagler also seems to think Yuku's average 0 - 20 people traffic compared to Tinnitus talk's 100 -150 traffic people makes the Yuku forum the most visted Tinnitus site on the internet! I think my calling that place small fry was quite accurate. There is no doubt that this place is by far the bigger and more popular forum by quite some distance!

Anyway I wrote that people should look at the ATA's track record for the last 40+ years and ask themselves if this is an organisation motivated to find an actual cure? It's one thing to find a cure but it's unforgivable their pathetic efforts to create public awareness of what Tinnitus is. Was it really so difficult in the early 1970's to send a letter and / or phone every school, club, bar, hospital, political establishment etc to spread the word? At least that way many people could have known what it was before they got it and taken steps to try and avoid getting it. Even in the 21st century some people have still never heard of Tinnitus and don't know how to try and avoid it. If I had known you can get a hellish never-ending noise from loud noises, antibiotics and nutritional deficiencies I could have at least taken steps and had a chance of avoiding it. This lack of effort over the last 40's years to make people aware of this condition is unforgivable in my eyes and it's not because of a lack of time or finances.

Also many people do not know that although the ATA is officially a non profit organisation there is nothing to stop individuals within it from profiting directly by being connected to businesses that make their money from Tinnitus sufferers. So for example several ATA members could have shares in companies like Soundcure and profit from selling Tinnitus relief products and that would be perfectly legal. There is nothing to stop them from doing so. Like the poster Molan said what would then be the motivation for curing Tinnitus and putting a company like Soundcure out of business? After studying the ATA's record over the last 40's they seem to only be interested in things which will provide a regular revenue stream rather then an actual cure.

An example of this is the former ATA chairman Dr Stephen Nagler who post on Yuku as Stringplayer and was formerly known as smn. He is part of a company that sells Tinnitus related products called General hearing instruments inc

http://www.zoominfo.com/p/Stephen-Nagler/42027604

http://www.generalhearing.com/about/staff-directory.html



Now knowing that he is part of a multi-million doller company that directly profits from people who have Tinnitus should raise a few eyebrows when it comes to searching for a cure. This individual like Soundcure stands to lose out financially if Tinnitus is ever cured so you have to ask what is the motivation to eliminate your profit margins? It's very strange how he always says there will never be a cure yet constantly tells people to donate to the ATA?

 

I understand your position Samsara, but i think ATA is just a small part of the "tinnitus cure research". For example, Action on hearing loss are very active in the UK, especially in the stem cell field.

 

Samsara,

Great post! You raise many important issues. I think we all want the ATA to succeed, but they seem clueless compared to the TRI. And it's not just that the TRI also has private funding. If you look at the corporate and philanthropic funding sources for the ATA--from 2012 to 2013--it is pretty dismal. And it looks like the "big money" sponsorship has been seriously diminished just over the past year.

Look at the first two categories of funding and how they've changed from 2012 to 2013:

http://www.ata.org/about-ata/2012-donor-recognition
http://www.ata.org/about-ata/donor-recognition

The reason why the ATA receives one star on the Charity Navigator is not from high administrative costs. The ATA's costs are not out of line. Instead, it is probably from their financial difficulties. Their "Primary Revenue Growth" is -13% and their "Program Expense Growth" is -15%. (This is for fiscal year 2011, ending in June.) The ATA just doesn't have the revenue to finance much research. Nonprofits frequently complain about dwindling resources, but to attract money you must grow your base and increase your corporate and philanthropic sponsorship. And both require spending money. There's a nonprofit article, which I need to look up, that states how many nonprofits starve themselves because they lack an effective plan to raise funds. Why doesn't the ATA set a funding goal then develop a three year plan to get there? If they need cheap help, the ATA can network with universities' social service departments and get free help. They can even use organizations such as VolunteerMatch to conduct fundraising drives. (There are also sites where you can solicit free or cheap software writers. Why not utilize one to get an ATA tinnitus app? Charge a small free or give it away, and use it raise public awareness.) Whether through networking with other nonprofit heads or sponsoring internship with bright graduate students who understand current non profit funding challenges--the ATA needs fresh eyes to reevaluate their problems so they can solve them.

I do know about the ATA's high turnover rate. People with tinnitus want to forget about the disease. Let's face it: dwelling on it only makes it worse! But a high turnover rate makes recruiting new members even more important, and building a solid corporate and philanthropic base essential.

About generating public awareness of tinnitus, I agree they could've done more. People might say they aren't the American Cancer Society. And that's a valid criticism. But the ATA has done almost nothing to increase public awareness. Even over the past several years, when they've received more money from the US government, they have not promoted their programs outside of a small circle of ATA members.

I do laud the ATA for their lobbying efforts. But, unfortunately, the government is fickle with funding. This year, for example, we're in a sequester because Congress can't agree on a budget. It's a shame research has to be held hostage to political ineptitude. But that's the way with US politics, especially over the past several years.

About the tinnitus attitudes on Yuku, I agree it's a "Debbie Downer." The message is usually "Habituate or Die!" You do have Jim Chinnis from the ATA, however, and he does seem sincere and is positive. (I wish he promoted research more.) With little support for posting research, such findings are usually shot down quickly or dismissed as "snake oil." This seems to contradict the reason for a bulletin board: to increase awareness and offer information. Everyone wants to habituate. But habituating does not preclude wanting a cure!!

Regarding SoundCure and General Hearing Instruments, I am sure their donations are ethical. Nonprofits do need corporate sponsorship. Often that sponsorship is from companies who benefit from the nonprofits' membership rolls. I understand the ethical questions such donations raise, but, in any case, can the ATA really afford to turn down any donations?

Anyway, welcome to TT, and I'm sure everyone is looking forward to reading your posts!

 

Hello Jazz and thank you for your nice friendly post!

I absolutely hear what you are saying and would certainly be inclined to agree with you had the ATA been formed in the last 5 years or so. However they are over 4 decades old now and it just isn't good enough to put it lightly. Now I see giving the ATA my own money a lot like a job interview. Now if I'm recruiting for a company I look at the candidates history and carefully examine what they have done previously and of course ask any questions I have.

So I look at the ATA for the last 43 years and am confused at the bizarre lack of effort in at least trying to create public awareness of this issue. I send numerous emails asking various questions and am completely ignored. So based on this they have failed utterly so I'm giving the job to the TRI instead!

The lack of effort in creating public awareness is a disgrace and had they actually made an effort the vast majority of people on this site at least would have stood a very good chance of avoiding this condition. Before I got this several months ago I'd heard that some people can experience a temporary ringing in their ears after a loud concert but not once had I ever heard of this ringing ever being permanent and had never heard of 'Tinnitus' before. This is 2013 and the ATA have been around since 1971! Sending letters and making phone calls to raise awareness does not cost millions and millions of dollars.

Their conduct is appalling as well. As Daedalus stated they break their own rules and as myself and others on this thread have said they don't bother replying to questions. However as a quick test they responded VERY quickly when I stated I was going to give a rather large sum of money to them. It was a shame for them that I was joking about that but it just shows you how they really operate. They have little interest in answering peoples legitimate questions about the organisation. They still want your money though.

I'm also concerned that the company Soundcure was born from technology that was directly funded by the ATA. Wonder what connections there are between certain members of the ATA and Allied minds? Why would Soundcure sponsor an organisation who if successful would wipe out their entire client base and bankrupt them? It doesn't make much sense and Allied Minds don't exactly strike me as a charity! They are a business first and foremost and they created Soundcure in order to increase their profit margins and nothing else. I don't trust the ATA for breaking their own rules and having this company as a corporate sponsor. In my opinion money given to the ATA is money thrown away and if you donate to the TRI you have a better chance of eventually seeing something in return eventually. The ATA have demonstrated to me they have no real interest in finding an actual cure nor in creating public awareness and they have a 43 year consistently showing that. I don't see that changing in the next few decades no matter how much money they get.

 

Great points.

Did you ever read the ATA's sponsored Soundcure "research" paper? This lighweight paper described the tones used by SoundCure. It mentions, passingly, that these tones could easily be made into MP3 files. Seemed to be affordable, in the interest of science, in the spirit of helping mankind.

But the idea of affordable MP3 files didn't happen. Somehow this ATA research paper morphed into a $2000 SoundCure device, with slick b.s. business hype about how great this thing is. Interestingly, I haven't read one positive post about SoundCure by any user.

Past ATA board members have included physicians who also sell gingko biloba/vitamins which they claim help tinnitus. To date, these substances have not been scientifically proven to help tinnitus. Clearly there was a question of professional conflict of interest having these people on the board.

I may join the ATA again, but only if I agree with the direction they are taking in their research.

 

Am I right in thinking that the ATA funded the research into SoundCure? But don't get any money from it other than their corporate sponsorship?

 

Hi Karl, yes I have read that and it helped me come to the conclusion that those involved with the ATA have no real interest in curing anything but rather finding something that will provide a regular income stream. Had they made these tones for free download then I might have seen this differently. I too have never seen any positive posts about Soundcure either. The very name of it should be illegal in my opinion. It mocks Tinnitus sufferers.

Conflicts of interest seems to be a central theme to the ATA. There are many examples over the years of that. The only way I would ever give my money to the ATA is if there was an entirely new staff and they demonstrated a real commitment to creating awarenss and actually trying to find a real cure. I doubt that is ever going to happen. Their entire 43 year history shows to me they don't any real interest in doing that so why change the habit of a lifetime?

 

Was just reading through the forums.. And basically this guy is just right on point with what he said.. And also everyone that agrees.

 

Yes it is true that nowadays science is often like a sport: the one who is the fastest gets the funds and often form is more important than whats inside. But I do believe that there is a lot of research on Tinnitus going on in Europe as well, the problem being that it is mostly done in the native language and most on the articles we read are in English ( I know that there are also Scandinavian, Eastern-Europe, French and German people here but most of the articles posted are in English.) Also, recently great progress has been made in cancer research. It has been long known that everyone's body produces cancerous cells, but if the immune system functions normally it will destroy the cells. When people get cancer, it means that the immune system is not working properly. However for years and years cancer has been cured by attacking the tumour which puts a lot of stress on the whole body. But recently a small pharmaceutical company - Mederex - worked out ways how to treat cancer by supporting the immune system. Of course it is not going to work on all people but this type of treatment has less side effects and actually deals with the root of the problem. Now a group of Estonian gene technologists are working on ways how to detect flaws in the immune system by taking blood tests. And you know what the funny thing is? They said that it is simply a swift in thinking - the answer had been there all a long. Now it is likely that in 10 years time most cancer patients will be able to receive a better treatment. What I want to say is that first of all, it is rarely the big associations who come up with the good solutions. Often smaller companies are more likely to take risks and have true fanatics working there. In addition to this, sometimes the cure just needs a Heureka! moment. In tinnitus research a couple of years ago there already was that moment - now we know that it is probably efficient to treat the brain abnormality, not the ear. Also, many-many scientists working in T research have it themselves and that is the main motivator for them. I have hope that better treatments are yet to come and it will come from some company we may not even know.