Getting Celebrities to Raise Awareness of Tinnitus

Go for it Daniel.

 

Also it makes the music industry look bad if rock stars etc are all coming out about tinnitus.

 

In the Uk there are two big TV personalities that have tinnitus, albeit mild:

Phillip Schofield
Susanna Reid

Both work on breakfast time tv as well as other things.

 

Guys, is there any progress in this matter? I think it would be very very valuable to get at least one famous musician to help with the cause. Some of the musicians make clear reference to Tinnitus in their lyrics which means they are very open about their struggle, e.g. Trent Reznor, who I have great respect for. Why not trying reaching out them first. Seems he's pretty active online: https://twitter.com/trent_reznor with 1.6M followers!

Just imagine what enormous impact would have a voice of well known musician. It could alleviate the apathy to support our cause and drive the research. @Justin De Moss @Hazel do you think this could work?

 

I like the idea. The biggest challenge is this - celebrities, generally speaking, don't give money to causes. They lend their name - which can be great but often leads to transactional giving rather than relational giving. In the end, we need to find a celebrity that 1) suffers from tinnitus in such a way that it is a huge problem for them, 2) Is open to communicating and starting a campaign to help those who suffer as they do.

Lots of good ideas, but until someone can break through and make it happen...

 

We were able to get that one singer on the Tinnitus Talk Podcast, right?

Maybe someone with a large internet following who primarily entertains online. I know that both Jack Septiceye and CGPGrey have tinnitus. I think they'd be easier to contact than, say, Keanu "Breathtaking" Reeves.

 

Hello @Justin De Moss,

There's a couple of people that Wikipedia of famous people with tinnitus didn't mention. One of them is the musician Grimes who has tinnitus and she even had to cancel some concerts before because of it. She's also married to Elon Musk who I imagine sympathizes with his wife's struggle with tinnitus. I would imagine both of them being open to spreading awareness.

There's also FKA Twigs who also struggles with it and she once was so down that she thought one of her interviews was going to be her last one as she couldn't handle it at one point.

EDIT: My mistake. Grimes isn't married to Elon but they're in a relationship.

 

Good info to have. Thank you. If I ever come into contact with them, or someone who can introduce me I'll do my best to make it happen!

 

I think seeing if we can get the creator of Minecraft, Markus Persson, to do some donations could be a benefit... He is a gamer, and I think a lot of gamers do have tinnitus, likely him as well. He sold Minecraft to Microsoft for $4billion, and probably still has some left to spare. He's probably pretty easy to get in touch of on Twitter. In fact... I think he replied to one of my tweets once.

 

I know of somebody famous with tinnitus who I have spoken to regarding tinnitus. With all due respect, he is a little less known celebrity, but someone who suffers with tinnitus.

I could ask him; but what exactly do you want him to do?

I'd also like to ask him first because I believe all celebrities are of course entitled to a private life. It's up to him if he wishes to contribute.

@Justin De Moss

 

I don't need awareness. I need a better treatment or cure. The more the merrier. Kind of selfish.

 

I think we need both, more awareness and treatment/cure. The more awareness we get about tinnitus and hyperacusis, the more likely it is that people will treat this condition seriously and it will also cause pharma companies to research these conditions.

 

I would argue just finding someone willing to talk about hearing loss would be good too. In the end, tinnitus sufferers and hearing loss sufferers tend to coincide and want the similar things in terms of prevention. For fundraising, it would be more difficult.

 

There are several major issues. The one is that truly severe tinnitus (and hyperacusis in particular) destroys your career -- or at least alters the trajectory in a way that makes it hard to become famous. The only way it would be meaningful is if a major celebrity had their career wrecked by the condition. Chances are, if they rose in the ranks of fame, they probably don't have a severe version -- or maybe they did, but it improved enough. Really, a musician is probably the most likely to get famous and then have hyperacusis/tinnitus strike in a serious way.

The other problem is that saying something occurs a lot is not necessarily that moving. Most adults, if you ask them if they've ever had tinnitus, will say yes. So I think the bigger issue is that people with severe versions have their lives ruined. Mild tinnitus is certainly not high up there in the world's problems.

Step one in generating advocacy is having different definitions for severe and mild tinnitus. As we all know, the suicidal crowd and the "just habituate" crowd are obviously working with different problems.

 

I've reached the same conclusion. We get help by riding with hearing loss people. Not only does hearing loss have more awareness, but the treatment (i.e. regenerative medicine) that helps hearing loss probably helps tinnitus the best.

 

Hello @Justin De Moss, any updates on reaching someone famous to support our cause?

Just wanted to point you to pretty unusual thread here started by @Al Di Meola https://www.tinnitustalk.com/threads/lorazepam-and-great-sleep.25631 - either a famous guitarist or some pretender, as the information about tinnitus onset corresponds to what Mr. Di Meola was telling about his T openly.

Nevertheless, regardless of this unusual post, Al Di Meola is someone who spoke openly about his T and the struggle, so there's a chance that he would be keen to get involved in our cause. Do you think you could reach him on Twitter https://twitter.com/aldimeolamusic or via https://www.aldimeola.com/contact?

 

Some actors got tinnitus or hearing problems after they got famous. For instance Mark Ruffalo or Jodie Foster. Apparently Mark had SSNHL and acoustic neuroma so he does not hear in one of his ears. And Jodie uses hearing aids.

 

One could look at Cameo, and see if they can't get voice actors to read lines raising awareness on hearing loss and T.

 

Awareness leads to treatments. That's the whole point of doing it.

 

I know the lead guitarist of DragonForce is on Cameo and it's like 50 dollars for him.

 

What would that achieve? You get a video file off of him and you do with that exactly what? How would you get an audience for the video file? And what would you ask that guitarist to say? I've never heard of DragonForce so probably some obscure band?

 

Do you have a suggestion instead?

 

I believe Will.i.am from the Black Eyed Peas has tinnitus.

 

Yes he does and he makes a mockery of tinnitus and real sufferers. He thinks it can't get serious. Will.i.am is USELESS and harmful to raising awareness.

Read this thread and watch the interview...

Will.i.am on Loose Women (British Chat Show) Talking About Tinnitus

 

Dragonforce is one of the most loved bands by actual musicians from my knowledge. Very aggressive guitars and vocals, like Metal. Also, I would say you could get several "Celebrities" To do it and make a PSA about it our of it. So long as they actually give a clear measure of what too loud is, and relate that to everyday experience, it should serve at least as an effective warning. If you want to get more awareness of tinnitus, you would have to get someone who experiences it more I would say.

Again, I'd probably try to get just a message of protecting your hearing, cause it's precious, and that modern electronics ARE set too loud for regular consumption, and not beat around the bush with "Oh, well, 60 minutes at 60% volume." But that Speakers at concerts and max volume earbuds are roughly 120db, which does permanent hearing damage in 30 seconds. You should wear ear protection to concerts, especially if you're near the speakers, and take breaks. Look into volume limiters on your phone, and talk to your doctors about any hearing concerns. If you don't head these warnings, you can end up with hyperacusis, tinnitus, and visual snow. Probably mention that 1/4 American Adults that say they have good hearing have hearing damage.

It wouldn't be as great as a tinnitus awareness campaign, but to get people to actually take hearing damage seriously, you need to give them the terrible effects of it besides. Will.I.Am may be bad at taking tinnitus seriously, but Huey Lewis has it bad, and doesn't bad talk it.

 

If not celebrities, what about an ENT or an audiologist with severe tinnitus or hyperacusis? I'd be interested to see how an ENT or audiologist with life changing tinnitus & hyperacusis feels about taking an LDL or tympanometry test (if not for the first time, definitely the second time around). Someone on that side of the fence but in our shoes should be able to see both sides of the coin. Would they attempt to tell themselves that they have perfect / near perfect hearing according to their own pure tone test, and come to the conclusion that nothings was wrong and its all in their head?

Sorry if a bit off topic, might not be amazing for raising awareness anyway, but could be good for bridging the divide between the doctors and researchers.

 

Generally speaking, we need people to fund our research and those of others. For us, we have a $735K proof of concept study. It's funded to $605K. While we are going to go ahead and start it in September - we won't be able to finish it and validate the results until the remaining is funded. We are $130K away. A gift of $65K would do it since we have a match from a local foundation.

It is always no unless you ask. More importantly, I'm not looking for a checkbook. I'm looking for people who want to join us, partner with us, financially and through prayer, if they believe in that, through introductions, etc. to advance this research and get it into the clinic as soon as possible.

 

Yes!

 

No, not yet. I need a personal introduction to someone, not just a name of someone famous with tinnitus.

I'll check out the thread and twitter!

 

@Justin De Moss,

Have you looked at talking to the Les Paul Foundation? They seem to be doing good work on trying to get the word out as well.