American Tinnitus Association's Board Chair on NBC TODAY: Is This the Right Message to Send Out?

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And this, ladies and gentlemen is exactly why the only tinnitus organization I would [and do] donate to is TinnitusHub, and TinnitusHub only. The ATA needs to shape up or ship out. And honestly at this point the latter seems the better option.

 

What do people in the ATA even do on a daily basis?

I’m not 100% on what they even do to raise awareness and gain funds other than getting very few volunteers to do support group meetings for them.

For example what did they do before the A Star Is Born movie?

Do they just milk things that just come to them / just posting articles?

I think I’ll just donate straight to research groups if they allow it.

 

Good question. You can get some answers by looking at their Facebook page. For example they posted that their CEO and Board Chair attended the ENT meeting in Atlanta. After the meeting I posted a question - how did it go? Were there any new products or treatments presented at the meeting? (I was thinking of Neuromod and MuteButton) I had to ask twice by IM before I got an answer and then I posted the answer on the Facebook entry. They never mentioned Neuromod.

But questions remain. How many full time and part time staff are there? And what do they do? You can see what the BTA staff do because they are out there doing it! Moderating a forum, Facebook communication, fundraising, support groups, TV, Conferences, Expos, Information Days, Initiatives like Hear Us Out.

They posted on their Facebook page that they were raising awareness before the movie. I posted a comment asking if they could be more specific - no answer. Then there was a notice posted that someone from their Board with tinnitus did an interview with Men's Health Magazine, so I guess that was it. Then, in conjunction with the movie there was the NBC TODAY piece. I get very upset when I think about that because I had posted a comment on their Facebook page something like - Wouldn't it be nice if Lady Gaga and Bradley Cooper took up tinnitus as a charity cause. And lo and behold ATA answered me saying they had made an inquiry. The answer was not at this time but they would keep in touch. When ATA posted the NBC piece I felt like any chance with Lady Gaga and Bradley Cooper evaporated.

They say their primary member benefit is their magazine, Tinnitus Today.
The other member benefit is their podcasts.

I was surprised and encouraged to learn that ATA have a process to review the grant applications they receive that includes review by a panel of people with tinnitus in addition to review by the Scientific Committee and their Board.

So, they are doing things but its not visible and there's no follow-up and if you don't ask the right question you don't get an answer.

In my wildest dreams I expected ATA to come back with a response to the comments they received last Saturday. Now, I'm doubting that will happen and am wondering if we shouldn't write something up as a response.

TC

 

They just sit behind desks twirling thumbs, waiting for a pay cheque!

And they’ve been doing that for the last 50 f....g years

 

Candy Crush'in

 

Or we just give up complaining because no one listens. And our silence is interpreted as we’re habituated or cured. That’s why we should never shut up.

 

Pick a disease, any disease: The majority of people don’t have it. So why bother trying to cure anything?

They want to shut us up by making us feel like there's something wrong with us.

 

@lymebite,

Can you identify from the 990 the sources of revenue that added up to $861,791? Some must have come from memberships, where did the rest come from? Do they have any permanently restricted assets that are generating revenue? - Thanks, TC

 

@TuxedoCat their audited financial statements provide a lot of detail in answer to those questions. Look at page 4 of the PDF link which is rather interesting. In their fiscal year 2016 nearly 100 percent of revenue was from contributions and very minimal investment income. But, in 2016 they also receieved a one-time bequest of about $1 million. It looks like that bequest started to provide some significant investment income in their fiscal year 2017.

http://www.ata.org/sites/default/files/2017 American Tinnitus Association Financial Statements FINAL.pdf

 

@lymebite,

Thanks very much. Unfortunately now that this has my attention, I have to leave it and go out. I will be back to this tomorrow. Thanks again, TC

 

Lets not forget what the ATA's head Chairperson stated in a very important publication:

"Tinnitus is a sign that something is not quite right in your auditory system. Though it can be a very serious condition, don’t assume your turmoil will be as bad as Cooper's character. The condition usually does not worsen and can be effectively managed if it does get worse, explained Dr. LaGuinn Sherlock, a research audiologist and board chair of the American Tinnitus Association. And more importantly, prevention and management can significantly help.

“The biggest fear people have when they get tinnitus is that it’s going to get worse and worse and worse. And that’s not the typical or the natural course of tinnitus,” Sherlock told TODAY.

“What’s more typical is that it’ll fade away over time.”​

And they have yet to issue any statements of apologies. Of course they think they are right and above being proven wrong. That is why those that questioned on Facebook were ignored or deleted.

 

@lymebite,

Thanks for sharing the financials.
They've invested in some stocks and mutual funds according to the notes in the financial statements.

 

I’m not sure about you guys but I find this attitude from ATA very disturbing.

In my language we have a saying: fish stinks from the tail but it’s cleaned from the head!

So @Markku can we send ATA a letter from Tinnitus Talk, on behalf all of us, to express our opinion.

This is an insult to all of us!

 

And they brag so proudly about $50K that they allocate for “research”!

What a load of crap they are!

 

@lymebite, @Samantha R,

Investment income is listed on Page 4 as $160,240. How much money would need to be invested to yield that kind of investment income?

 

@TuxedoCat in the case of the ATA, the statements (on page 3) list the value of investments as $1,619,834.

The stock market has been rising like crazy the last few years - in 2017 the Dow Jones Industrial Average increased about 28 percent including dividends. So it has been an easy time to do well with investments.

 

So, you feel an almost 10% rate of return is reasonable? Right I see that they are 100% invested in an Income Mutual Fund, so the 10% may include capital gains as well as dividends. Right, again on Pg 10 investment income is $27,844 from interest and dividends and $140,536 in unrealized gains.

So well done, a little nerve wracking that the entire investment looks to be in one fund. I wonder if the $1,000,000 is permanently restricted? Let's hope they have a good investment advisor.

 

I am not sure, how they did on rate of return can get so complicated with needing to know how the performance did relative to benchmarks, and things like their time frame, is it shorter term or longer term. Definitely agree that let's hope they have a good investment adviser.

But...

...if I could wave a magic wand, what I would love to see is for the entire fund to be spent on promising research in the near term, not dribbled out $50k at a time for years to come.

For example, elsewhere on Tinnitus Talk there has been discussion that Professor Thanos Tzounopoulos at the University of Pittsburgh is ready to test a new version of Retigabine (Trobalt) and the only thing stopping him from moving forward is lack of funding. So with a magic wand, that is how I would wave it - send those funds to allow his promising research to progress.

 

This was explored few years ago when Prof Ernest Moore was in Retigabine game.

ATA’s answer was that they don’t contact researchers but researchers have to contact them and apply for grant.

That was a true eye opener!

Any organisation established with the aim to help would jump at this opportunity even if there’s a tiny chance for cure especially considering nothing is available so far.

With the lousy amount allocated to research it’s nowhere near what Prof Tzounopoulos would need.

I was under the impression that Department of Defense is involved in his work but that obviously is not as much as is needed.

I said many times in the past that tinnitus cure is not coming from neither ATA nor BTA!

 

Unfortunately I have to agree with you @valeri. The majority of these people working for tinnitus organisations siting behind a desk and twirling their thumbs have never experienced tinnitus and therefore know nothing about it.

 

The message below is from ATA's Facebook page. I have IM'd them to say I would not be donating because they have marginalized those of us with chronic tinnitus. I have no desire to see another uproar on their Facebook page but at the same time I wanted them to know why I would not be donating. They have never said anything in follow-up to the NBC TODAY article. I would urge all others who would have otherwise donated do the same and send them a message by IM thru their Facebook Page. - TC

Tuesday November, 27th is #GivingTuesday. This year, Facebook is partnering with PayPal , to match a total of up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits. The American Tinnitus Association is one of those non-profits. All you have to do to help ATA participate is to create your own Facebook fundrasier and designate ATA as the recipient. All donations made on Facebook on Tuesday November 27th will be matched by Facebook and Paypal up to $7 million. Use the link below to create your fundraiser and ask your friends and followers to donate!

https://fb.com/fund/AmericanTinnitusAssociation/​

 

One thing I find really unprofessional is the standard of their writing in most of their posts. Do they not read what they have written before they post it? They don’t even edit the mistakes out afterwards. To me, this shows a lack of care towards the finer details, and also the image of the organisation. It comes across like a bunch of kids are running it as a high school project or something (not that that’s a bad thing).

I can’t Imagine a large well-known charity having standards as low as theirs.

 

@TuxedoCat did you receive a response from the ATA to your statement above?

 

No, Starthrower I did not receive a response and I don't expect one.

 

For any charitable organization such as the ATA the lack of responding to your post is unacceptable.

@David is often here for the Tinnitus Talk members and answers questions and if he does not have an answer he will find one and report back. I hope members of the BTA understand how significant this aspect is. And he does not come across as an egotist or give blah blah non-answers.

 

A big problem with the ATA - American Tinnitus Association is that it's advised for US health non profits to promote research. That's fine, but what is the ATA doing to address needed health care changes/treatments for those with tinnitus! Of course the ATA doesn't want to rock the boat with healthcare providers or medical universities as they either feed their mouths with donations or they open doors for acceptance.

 

Fact is, she's correct. For the overwhelming majority of people who get tinnitus it does get better or disappears over time. We're just those lucky people who fall into the tiny percentage of people for whom it's hell. The general belief is that tinnitus is a fairly common condition which affects 5%-10% of humanity. Of that 5%-10% the belief is that only 1%-2% of the that group actually have intrusive/disabling tinnitus. That's still a metric shit ton of people anyway you slice it but it doesn't change the fact that most people here are in an absolute minority and that doesn't drive investors to invest.

That being said, it would be much more responsible to highlight us - the minority - of people who are in desperate need of help and for which the condition isn't mild but is, in fact, crippling in its nature. It destroys people's ability to work, their relationships, their mental and physical health.

These are the salient points she should have made clear.

 

I think the issue I had with it, personally, was that it wasn’t qualified. As I said before, if you are using that statement on the general population then you would have to include temporary gig tinnitus and other temporary forms which fade in almost all instances.

However, had they said it fades for people with chronic tinnitus who have had it for a year or more, then it’s a different story. I have no idea what they were referring to, but they completely trivialised the condition (and to a large audience) when there was a unique window of opportunity to offer preventative advice and/or show the worst side of it. They could have shown that tinnitus is no joke - which could have acted as a warning to others. Give people a glimpse of the hell that some people suffer and then show how they can help via donations to research, etc.

They essentially said it’s nothing and that it fades, so what’s the big deal? To a non-sufferer, that’s how it read. I’d be confused if I didn’t know anything about this condition and then read that article; I’d think why they bothering with a tinnitus association then? Just let people get on with it I’d think.

They could have pushed the plight of the worst affected so much more.

 

I would like Dr Sherlock to listen to my electrical brain buzzing, pulasating, somatic tinnitus noise for a few weeks and see how she copes with it.

 

Your numbers are quite off, actually. From the ATA website (https://www.ata.org/understanding-facts):

The U.S. Centers for Disease Control estimates that nearly 15% of the general public — over 50 million Americans — experience some form of tinnitus. Roughly 20 million people struggle with burdensome chronic tinnitus, while 2 million have extreme and debilitating cases.​

2 million is about 1% of the whole population, not a subset of sufferers.

What that means is that - surprisingly enough - extreme/debilitating tinnitus is not that uncommon.