Contact the ATA Right Now — 3 Minutes to Make a Difference

[Watasha]

@tbuzz89 & @Christiaan,

Hey y'all! Love the help here providing your templates (please make sure to vote that you emailed them as well!)

I just wanted draw one distinction for everyone. The ATA, while far from perfect, does fund curative research that is in line with their "Roadmap to a Cure." Below is a link to their past funded research which you will see does not include a lot of behavioral/habituation type studies, especially in recent history.

https://www.ata.org/research-toward-cure/research-program/past-ata-funded-research

I think that we should definitely be encouraging them to stay on this track and also encourage them not to divert their newfound wealth away from research and towards other services they provide, like call lines, etc. My opinion is that this is one of their biggest weaknesses and I fear that the influx of money will only compound what is already a problem in how they allocate and spend their money.

Just my two cents on the matter. Thank y'all so much for emailing and sharing! This is super encouraging!

 

[Greg Sacramento]

There are quite a few universities and public companies doing tinnitus and hearing research with conditions that can cause this, but we need more. We also need the medical community to become more aware and adapt to proven research and not just by an one hour meeting with a drug rep.

I think awareness and call lines are also important. Call lines from my ER experience has been the lifeline of many with tinnitus as we had a local ATA rep willing to call assist a patient after leaving the ER.

 

[Watasha]

There are quite a few universities and public companies doing tinnitus and hearing research with conditions that can cause this, but we need more. We also need the medical community to become more aware and adapt to proven research and not just by an one hour meeting with a drug rep.

I think awareness and call lines are also important. Call lines from my ER experience has been the lifeline of many with tinnitus as we had a local ATA rep willing to call assist a patient after leaving the ER.

Greg, I would encourage you to pull up the ATA's financial statements. In it you will find that very little of their money is spent on research (5-17% give or take). If we want the end of all ends, I believe that they must increase their percentage of contributions that go to research substantially.

Otherwise, they may as well fund their magazine and call lines for perpetuity and we can hang on by a thread until we leave this earth.

I personally believe their call line process and their triage calls that pay Audiologists can be outsourced to volunteers. I also seem to find a gap in what I see that they do, and where their money goes in the financial statements, but that's just my opinion.

For this reason, I believe the gift of $2.7M is a PRIME opportunity to create a permanent, tinnitus research endowment. With added funds each year, this could create a permanent source of funding for tinnitus research which will attract talent to the money-scarce field and unlock additional research dollars waiting in the wings at NIH.

 

[Greg Sacramento]

@Watasha At one time going back 12 years ago and further, the ATA call lines consisted of volunteers. Not sure about now, but call lines from my ER experience 12 and more years ago had been the lifeline of many with tinnitus as we had a local ATA rep willing to call assist a patient after leaving the ER.

More awareness of what causes tinnitus and hearing loss is also needed and an organization such as the ATA should be much involved.

Here is a list of articles (7000+ with most being research studies on tinnitus just listed on PubMed:

Causes of tinnitus - PubMed

There are 12 other medical research sites with over 30,000 more studies. Most research is done by universities, but also public companies are engaged in products research. We need more, but I just think that ATA funds should mostly be spent on call lines and for awareness/education of the dangers of loud noise such as listening to loud music with an electronic device placed in ear or over ear. We need to protect children from making these mistakes, not knowing how loud noise can affect hearing and cause a permanent tinnitus disability.

 

[Watasha]

@Watasha At one time going back 12 years ago and further, the ATA call lines consisted of volunteers. Not sure about now, but call lines from my ER experience 12 and more years ago had been the lifeline of many with tinnitus as we had a local ATA rep willing to call assist a patient after leaving the ER.

More awareness of what causes tinnitus and hearing loss is also needed and an organization such as the ATA should be much involved.

Here is a list of articles (7000+ with most being research studies on tinnitus just listed on PubMed:

Causes of tinnitus - PubMed

There are 12 other medical research sites with over 30,000 more studies. Most research is done by universities, but also public companies are engaged in products research. We need more, but I just think that ATA funds should mostly be spent on call lines and for awareness/education of the dangers of loud noise such as listening to loud music with an electronic device placed in ear or over ear. We need to protect children from making these mistakes, not knowing how loud noise can affect hearing and cause a permanent tinnitus disability.

I disagree with you on what role the sole non-profit for tinnitus in the USA is to play. Awareness is great, volunteer call lines are great (and preferable), but it is unreasonable to hang our hat on call lines for the remainder of our lives. It is not until very recently that tinnitus research has even begun to pick up in a meaningful way and we know much of it in the past was spent on TRT, mindfulness, and CBT studies.

Given the increasing prevalence of younger generations with tinnitus, the need for a cure is only increasing as it is no longer a primarily end of life affliction.

It is a documented fact that tinnitus receives a fraction of the research dollars as other conditions. For example:

"In United States, between 2009 and 2011, average annual funding for diabetes by the National Institutes of Health (NIH) was $913 million compared to $214 million for hearing disorders, of which only $5 million was allocated to tinnitus projects."

Why Is There No Cure for Tinnitus?​

It is also a fact that tinnitus patients are highly dissatisfied with current treatment options. The population desires a cure, not a call line, but due to the complexity of tinnitus and cross-discipline cooperation that will likely be required, research needs more resources.

As has been mentioned, there are millions of dollars in funding for tinnitus sitting on the sidelines from entities like the NIH, but cannot be unlocked without proof of concept. The ATA plays a role in funding these seed grants for these scientists to then unlock additional, high powered funding.

It is also the norm for non-profit health related organizations to drive funding for research along with awareness raising. My push is to increase the focus of the ATA back towards research, as their focus in the past has been minuscule. This grant is a prime opportunity.

Take a look at the financials below and tell me if you feel like the product delivered meets your expectations.

Mind you the prior year included zero grants. 77% went to personnel with no grant funding.

 

[Greg Sacramento]

@Watasha They will be using the $2.7 million legacy gift for what we both want.

American Tinnitus Association Receives $2.7 Million Gift

About 70% of tinnitus is caused from loud noise and ototoxic drugs, but there's thousands of physical association causes - diseases and conditions.

Billions has been spent and are being spent on disease and condition research that may also cause somatic physical or pulsatile tinnitus. Tinnitus may be a key word within this research, but the word tinnitus doesn't appear in title of research study. The neck and head and most body functions within the human body can relate to other causes of tinnitus, including somatic physical and pulsatile.

With hearing loss, we have have a few public companies doing all they can. We need more research for this. The companies involved in hearing loss research got off the ground from the thousands of prior studies per the functions of the ear.

 

[Watasha]

They will be using the $2.7 million legacy gift for what we both want.

Correct and I would like to steer them towards a more permanent solution given their historical record of committing very little of contributions to funding very valuable seed grants. It would seem that they need some motivation in this area as ATA Board Members have joined for this very cause.

I'm curious what you mean when you say:

Billions has been spent and are being spent on disease and condition research that may also cause somatic physical or pulsatile tinnitus.

It would seem to me that implies that tinnitus related to non-somatic causes and subjective tinnitus don't receive anywhere near that kind of funding and would be underserved. Am I understanding you correctly?

 

[arcanesystem]

Not sure if anyone is interested, but I got a response from the ATA today.

It was a pretty generic reply, but then again, I'm not sure what I should have expected and I'm a little surprised they responded at all.

 

[TuxedoCat]

Well, I'll be....
Received this response just now from the ATA.

Dear Linda,

Thank you for touching base with the ATA to express your interest that the bequest we received be used to advance research. Yes, research and greater awareness of tinnitus are key to ending our battle with tinnitus.

A special task force, consisting of members of the ATA Board of Directors, which is composed of people with tinnitus, researchers, and healthcare providers, is reviewing how to preserve and allocate the funds so that we have the short- and long-term capacity to fund critical research.

We hope you'll continue to follow ATA activities, which also include patient support, advocacy, and education of healthcare providers so that – as we wait for cures and more treatment options – no one is left to struggle on their own with a diminished quality of life.

Warm regards,

Torryn Brazell​

 

[Shizune]

I got the same exact response.

 

[shelbynn]

Well, I'll be....
Received this response just now from the ATA.

Dear Linda,

Thank you for touching base with the ATA to express your interest that the bequest we received be used to advance research. Yes, research and greater awareness of tinnitus are key to ending our battle with tinnitus.

A special task force, consisting of members of the ATA Board of Directors, which is composed of people with tinnitus, researchers, and healthcare providers, is reviewing how to preserve and allocate the funds so that we have the short- and long-term capacity to fund critical research.

We hope you'll continue to follow ATA activities, which also include patient support, advocacy, and education of healthcare providers so that – as we wait for cures and more treatment options – no one is left to struggle on their own with a diminished quality of life.

Warm regards,

Torryn Brazell​

​

I got the same response today. It seems like they're hearing us at least!

 

[Ken219]

Well, I'll be....
Received this response just now from the ATA.

Dear Linda,

Thank you for touching base with the ATA to express your interest that the bequest we received be used to advance research. Yes, research and greater awareness of tinnitus are key to ending our battle with tinnitus.

A special task force, consisting of members of the ATA Board of Directors, which is composed of people with tinnitus, researchers, and healthcare providers, is reviewing how to preserve and allocate the funds so that we have the short- and long-term capacity to fund critical research.

We hope you'll continue to follow ATA activities, which also include patient support, advocacy, and education of healthcare providers so that – as we wait for cures and more treatment options – no one is left to struggle on their own with a diminished quality of life.

Warm regards,

Torryn Brazell​

I got the same with my name. Now they have a standard response.

 

[Nobody19]

When they send out standard responses, it does probably mean they got quite some mails!

 

[Watasha]

@arcanesystem @TuxedoCat @Nobody19 @Ken219 @shelbynn @Shizune

I wonder if we should recommend following up to that email? Torryn's response did not indicate that the feedback would be passed to the task force. If she disagrees, the message of these emails could die on the vine.

Perhaps we should try reaching out to board members directly?

Any thoughts?

 

[TuxedoCat]

I got the same with my name. Now they have a standard response.

When they send out standard responses, it does probably mean they got quite some mails!

It may be a standard response but this is progress with the ATA. They actually sat down, composed and sent a response. Knock me over with a feather!

Amusing that they hope we'll continue to follow their activities. They sure don't make that easy to do. And, 'follow' may mean a little more to me than it does to them. I'm tired of their Facebook mentality.

TC

 

[tbuzz89]

I got the same standard response today addressed to my name. At least our actions are being noticed. Let's see if anything they say in their email actually happens.

 

[Watasha]

I got the same standard response today addressed to my name. At least our actions are being noticed. Let's see if anything they say in their email actually happens.

I'd recommend at a minimum asking her if the board would be receiving the feedback from your email.

 

[TuxedoCat]

I wonder if we should recommend following up to that email? Torryn's response did not indicate that the feedback would be passed to the task force. If she disagrees, the message of these emails could die on the vine.

Perhaps we should try reaching out to board members directly?

Any thoughts?

I've been considering that. Something that suggests we would like to hear about the mission of the task force, what options they will be considering and ultimately the reason they've come to their future final decision. If the email address we used did not reach the board, we could ask if our request has been shared with them. If not, I'm in favor of reaching out to them.

I sense we need to pull information out of them. I'm tired of the Facebook mentality of post a picture of Torynn with the scientific committee or after a meeting at NIDCD/NIH. More importantly, tell us what transpired at the meeting instead of expecting us to 'like' their smiling faces and that be the end of it.

You guys put together a great suggested template that got a response. Can you give it some consideration and do it again?

 

[Nobody19]

@arcanesystem @TuxedoCat @Nobody19 @Ken219 @shelbynn @Shizune

I wonder if we should recommend following up to that email? Torryn's response did not indicate that the feedback would be passed to the task force. If she disagrees, the message of these emails could die on the vine.

Perhaps we should try reaching out to board members directly?

Any thoughts?

That sounds like a good idea!

 

[Watasha]

@arcanesystem @TuxedoCat @Nobody19 @Ken219 @shelbynn @Shizune

What do y'all think?

Hi Torryn,

The tinnitus community is starved for information so I appreciate the response! Transparency helps provide hope to those suffering.

Additionally, will my stakeholder feedback be communicated to the task force to be used in their decision making process? There is a strong desire for funding curative research and I'd like to ensure that this would be communicated to the decision makers. I'd also be curious to know what options were being considered and the reasoning behind their final decision when the time comes, perhaps a write-up in Tinnitus Today?

Thank you for your efforts in serving the tinnitus community,

John Doe​

 

[Snake]

Well, I'll be....
Received this response just now from the ATA.

Dear Linda,

Thank you for touching base with the ATA to express your interest that the bequest we received be used to advance research. Yes, research and greater awareness of tinnitus are key to ending our battle with tinnitus.

A special task force, consisting of members of the ATA Board of Directors, which is composed of people with tinnitus, researchers, and healthcare providers, is reviewing how to preserve and allocate the funds so that we have the short- and long-term capacity to fund critical research.

We hope you'll continue to follow ATA activities, which also include patient support, advocacy, and education of healthcare providers so that – as we wait for cures and more treatment options – no one is left to struggle on their own with a diminished quality of life.

Warm regards,

Torryn Brazell​

Got the same response.

 

[TuxedoCat]

Got the same response.

Even tho it is the same, it's progress. No one knows what people at the ATA do every day. In fact exactly how many people there are at the ATA seems to be a closely guarded secret. Compare that to BTA who are very transparent and actually doing things they believe will help the tinnitus community. Now I don't agree with everything BTA says or does, but I much prefer their transparency. At one point BTA and ATA partnered but the strong points of each don't seem to have rubbed off on the other.

 

[TheDanishGirl]

I got no response. Then again, they can tell from my email address that I am not in the US, so maybe they don't care much about my opinion.

 

[Watasha]

I got no response. Then again, they can tell from my email address that I am not in the US, so maybe they don't care much about my opinion.

I'm willing to bet that they care as much about yours as someone from the US.

 

[Drachen]

I got no response. Then again, they can tell from my email address that I am not in the US, so maybe they don't care much about my opinion.

That would be utterly ridiculous if true. This problem is worldwide, and while I understand the purposes of restricting to one region (ATA, BTA, etc.) to focus your efforts, there is no excuse for failing to respond to a sufferer that had taken the time out of her day to promote the cause.

I would be curious to see if you send a follow-up request in the next few days or so and see if they ignore you a second time. I don't see why they can't just hit you up with the same copied response they've sent everyone else.

 

[Watasha]

That would be utterly ridiculous if true. This problem is worldwide, and while I understand the purposes of restricting to one region (ATA, BTA, etc.) to focus your efforts, there is no excuse for failing to respond to a sufferer that had taken the time out of her day to promote the cause.

I would be curious to see if you send a follow-up request in the next few days or so and see if they ignore you a second time. I don't see why they can't just hit you up with the same copied response they've sent everyone else.

Agreed @Drachen. Did you get a response?

 

[Drachen]

Agreed @Drachen. Did you get a response?

I haven't written them. I've been keeping up with this thread since it began, and I was disappointed but not surprised to see that those who did hear back all received the same soulless and impotent response. Can't say I've felt very inclined to put any heart and soul into a letter of request only for it to be discarded and replied to with the same schlock.

Perhaps I am a bit jaded, but I am very skeptical and distrustful of non-profits like the ATA. I wish I could share the same optimism as you and the others do, but when it comes to research and development, only money talks.

 

[Watasha]

I haven't written them. I've been keeping up with this thread since it began, and I was disappointed but not surprised to see that those who did hear back all received the same soulless and impotent response. Can't say I've felt very inclined to put any heart and soul into a letter of request only for it to be discarded and replied to with the same schlock.

Perhaps I am a bit jaded, but I am very skeptical and distrustful of non-profits like the ATA. I wish I could share the same optimism as you and the others do, but when it comes to research and development, only money talks.

Maybe you could put your own spin on it to stir up some sort of emotion within the individual who reads it?

I will say it's a very a low time investment endeavor, I believe it's worth three minutes of your time even to receive back a boiler plate response. I feel that we owe it to all that have come before us and will come after us.

What's more likely to make a difference? Doing nothing or doing something? I know that I'd appreciate your help.

Perhaps you could submit your email here, it might end up in someone else's hands.

https://www.ata.org/contact

 

[Drachen]

Maybe you could put your own spin on it to stir up some sort of emotion within the individual who reads it?

I will say it's a very a low time investment endeavor, I believe it's worth three minutes of your time even to receive back a boiler plate response. I feel that we owe it to all that have come before us and will come after us.

What's more likely to make a difference? Doing nothing or doing something? I know that I'd appreciate your help.

Perhaps you could submit your email here, it might end up in someone else's hands.

https://www.ata.org/contact

I'm not sure I consider it even worth the effort, nor do I think it'll affect much in the grand scheme of things, but what the hell? I'll figure something out tomorrow and send the email on Monday.

I am even less trusting of online forms as I believe them to be even easier to disregard, so I'll just write to the same email everyone else has.

 

[Watasha]

I'm not sure I consider it even worth the effort, nor do I think it'll affect much in the grand scheme of things, but what the hell? I'll figure something out tomorrow and send the email on Monday.

I am even less trusting of online forms as I believe them to be even easier to disregard, so I'll just write to the same email everyone else has.

It means a lot to me personally and I am grateful, as I am experiencing a pretty intense spike today (probably the worst in my three year experience).

I can tell you that they do read those online contact forms, I've received numerous replies over the years on various subjects.