Getting Celebrities to Raise Awareness of Tinnitus

Discussion in 'Awareness & Fundraising' started by Justin De Moss, Oct 22, 2019.

    1. Justin De Moss
      Caffeine

      Justin De Moss Member Benefactor

      Location:
      Oklahoma City, OK
      Tinnitus Since:
      1983
      Cause of Tinnitus:
      My sister, and a firecracker
      If anyone knows a celebrity with tinnitus or SNHL, I'd love to connect with them to see how we can advance the research!
       
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    2. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      • Whoopi Goldberg
      • Pete Townshend
      • Gerard Butler
      • Chris Martin
      • Trent Reznor
      • Neil Young
      • Will.I.Am
      • Bob Dylan
      • Steve Martin
      • William Shatner
      • Rodger Taylor (Queen)
      • Barbara Streisand
      • Liza Minnelli
      • Eric Clapton
      Another list: https://en.wikipedia.org/wiki/List_of_people_with_tinnitus

      And there are lots of others!!
       
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    3. Dizzyhead888

      Dizzyhead888 Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      unknown
      We should reach out to them and others to donate.
      We need someone here to write an email template.
       
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    4. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      You could write a template... but if you won’t, I will try and put something together and post it here for you guys to look at and perhaps edit, definitely edit.

      I’ll try and get on that today...
       
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    5. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      Keanu Reeves, Whoopi Goldberg, two Metallica members, there are quite a few but I really think Keanu Reeves could make waves. He's been so popular lately...

      Maybe if all of us wrote to Keanu Reeves... he seems like a very good person and has tinnitus too... he's just not very outspoken but perhaps he might be willing to donate...

      It would be also quite something if he turned out being Our Real Life Hero. Maybe we can name the letter that...
       
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    6. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      I just scribbled this down... throwing this out there as a very rough template...


      Dear Mr./Ms. ———,

      My name is ———.

      I am a member of the Tinnitus Talk patient community.
      We are a group of people who suffer from tinnitus and share information, knowledge, and emotional support to each other.
      Some people have tinnitus from noise-induced hearing loss, others from TMJ or mechanical reasons related to nerves in the neck and jaw. Some have tinnitus due to ototoxic reactions to drugs, some from Meniere's disease or otosclerosis, and some have tinnitus from ENT doctors carrying out microsuctions to remove ear wax or acoustic reflex tests.

      The forum members come from all walks of life, some are military veterans, teachers, teenagers in school, factory workers, musicians, professors, office workers, nurses, moms and dads.

      The staff of Tinnitus Talk work for free and volunteer their time and expertise. The forum squeaks by on contributions from 10 dollars to 50 dollars from members who can afford to help.

      I apologize for being so long-winded. What the forum needs, and the reason I am writing this, is that we could really use the help from somebody who has a voice and is recognized by the public, i.e., a celebrity or famous person.

      If you or somebody of your stature could promote our cause it would be of great help.

      Tinnitus is a growing epidemic which is not taken seriously enough. It can drive people to suicide and put them out of work. We need to encourage the public to be more educated, concerned and invested in our plight.

      Any help would be greatly appreciated. If you have a moment, you can visit our site at https://www.tinnitustalk.com and have a look around.

      If you feel inspired, perhaps you could make a statement encouraging people to donate to tinnitus research, to take tinnitus seriously, or something that suits your feelings that you can stand behind.

      Thank you for your time.

      Sincerely,
      Daniel​


      I didn’t mention hyperacusis, and that should be mentioned. My spelling is shit.
      I didn’t spend a long time, I am sorry... so if this is garbage... then in the bin it goes...
      A very rough draft...

      Your turn now.
       
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    7. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      This is amazing! I love it. I think it is very straight forward. I think it being specifically about the forum might need some tweaking, as they should be representing all who suffer from tinnitus, whether they are on the forum or not.

      This disease needs to be taken seriously, and the message you wrote says that.
       
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    8. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      This is a wonderful letter @Daniel Lion.
       
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    9. Time4fix
      Ape-like

      Time4fix Member

      Tinnitus Since:
      The event
      Cause of Tinnitus:
      Acoustic trauma
      I love the letter and really appreciate you doing this.

      Should we also give them something more specific, for example some of the names of causes they could donate to. Like Hough Ear Institute or others we think are onto something? Perhaps to make the letter stand out, a lot of people could somehow put their signature down on the letter. That might have a bigger impact if they see all these signatures representing all those people.

      I'm just trying to brainstorm about this. You do as you please :)
       
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    10. SouthKorean
      No Mood

      SouthKorean Member

      Location:
      South Korea
      Tinnitus Since:
      2017/12/28
      Cause of Tinnitus:
      Stress, Shock
      I always bless you for showing good influence.
       
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    11. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Hi ChrisBoyMonkey, could you make those modifications please? Or somebody... let’s tighten this up together...

      Somehow hyperacusis needs to be woven in. Appreciate your support dudester.
       
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    12. smapti

      smapti Member

      Tinnitus Since:
      07/1991
      Cause of Tinnitus:
      Ear Infections
      Many celebrities have been mentioned as having tinnitus. The problem is that most of them probably don't have debilitating tinnitus - they've just mentioned it somewhere along the lines on a talk show or somewhere in a lyric. In my opinion, the majority of people in the world who experience tinnitus (including celebrities) don't have a very serious form of it. Therefore, it only bothers them sometimes.

      As an example, David Letterman mentions only a "ringing" in his ear, and Pete Townshend mentioned in his interview with Letterman that he has gotten his under control (meaning that he has learned to ignore it). Letterman did NOT mention additional tones such as buzzing / chirping / high frequency pulsing / crickets / cicadas / live-wire electricity, etc. Which leads me to believe that his is also not that bad.

      Anthony Kiedis (from the Red Hot Chili Peppers) mentions it in his book. But that's about it - he doesn't go on to express anything about how it severely affects his lifestyle.

      Trent Reznor continues to perform and play live shows, as does Metallica, among many other musicians. So, once again... not to be negative, just because it's mentioned, it doesn't mean that they have it that bad.

      In my opinion, out of all the celebrities who are mentioned, their tinnitus does not affect their lifestyle severely.

      But... here's a couple more to add to the mix:

      Suzanne Vega - Blood makes noise... it's ringing in my ears.

      The Heads - "Damage I've Done" - There's buzzin' and ringin' in my ear, and I wonder where do I go from here.
       
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    13. Dizzyhead888

      Dizzyhead888 Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      unknown
      Thanks, good start, I suggest you start a thread on it so we won't diverge on this Hough Ear Institute thread.

      It should be divided into clear sections with bulletpoint-like structure and clear capitalized headings. Below is just a template. You add what you wrote under the rough classification below:
      1. SUMMARY
        1. The purpose of the below is to... (to be written once the draft is finalized)
      2. WHAT IS TINNITUS
        1. Overview
        2. % of people affected
        3. #1 disability for veterans
        4. Growing phenomena given the louder environments, headphone music, night life, etc...
      3. HOW SEVERE AND DISABLING IT COULD BE
        1. Limitations and poor quality of life, with real examples, (the desire to die, suicidal feelings, feeling in prison
        2. Severe tinnitus examples:
        3. For the milder that live under the fear of getting worse
        4. People waste so much money trying scams out of desperation
      4. WHY THERE IS NO CURE AND TREATMENTS FOR IT
        1. No funding and refer to the thread especially on why there is no cure
        2. Current treatment options are very ineffective
      5. WHAT IS NEEDED FOR A CURE
        1. Funding to drive more research
        2. Funding to drive current research in progress
        3. Awareness
      6. WHY WE ARE REACHING OUT TO YOU IN PARTICULAR
        1. Because we believe you have tinnitus and can sympathize with the suffering of many
        2. Because we believe you have the financial capability to make a difference
      7. WHAT IS REQUIRED FROM YOU
        1. Raise awareness
        2. Donate to (we need to figure out where)
       
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    14. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      This is exactly THE ISSUE. Celebrities have mild tinnitus, it doesn't debilitate them. They have all the possible support networks, best doctors and lots of money to keep themselves busy while cruising the world.

      We will never get celebrities to genuinely raise awareness of this godforsaken condition...
       
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    15. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      William Shatner is a disgrace. He is a spokesperson for the ATA. He made a Twitter post saying that he can take his mind off of his tinnitus by reading. I called him out for downplaying this disease to the public. He instantly blocked me and then I got attacked by a mob of idiots claiming that he isn't a spokesperson for the disease and that he was just describing his own tinnitus and I was just a big bully.

      What we need is celebrities that advocate awareness for the people that have life altering debilitating tinnitus as well as the advancement in research and emerging drugs to hopefully treat tinnitus.
       
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    16. arctic loon
      Dreaming

      arctic loon Member

      Location:
      Finland
      Tinnitus Since:
      08/2015
      Cause of Tinnitus:
      loud music
      We also really need awareness for hyperacusis. Severe form of it is so debilitating and completely destroys the person suffering from it.
       
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    17. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      How do you get letters to these people?

      For example, I want to write to Whoopi Goldberg. I like her, how do I email something to her? Stupid question, but how do you contact these people?

      I have written to newspapers, the ATA numerous times who never responded to me (funny that), the Gates Foundation, Zuckenberg Foundation, President Trump, the VA in my home town, the WHO, Doctors without Borders, the Rotary Club.

      I play the lottery... I know... the poor man's tax... but I believe in chance and the more we put out the more likely it is for someone to bite. I know it seems futile, but I am going to tweak the letter and send some off. I hope a few other members will do too.

      So yeah, how do I get in touch with these people? Do I just google them? I have no idea.

      I met Marvelous Marvin Hagler, the boxer when I was a teenager bussing tables in a restaurant. Stephen Heller, the god from Stanford, answered my email... That's about as close to fame as I've come... well I was best friends with a famous Russian sculptor, but nobody knows of him outside of Russia and art circles... so yeah...

      We got Mr. Justin De Moss pulling for us... for free... that's huge...
       
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    18. Dizzyhead888

      Dizzyhead888 Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      unknown
      Can different people pick a section and take a crack on it please?
       
    19. smapti

      smapti Member

      Tinnitus Since:
      07/1991
      Cause of Tinnitus:
      Ear Infections
      These days I think Twitter seems to be your best bet [unless they block you, of course]. Shatner actually sounds kind of like a douche dictator, to be honest - can I say that word on here?

      I am a fan of Tom Green, and when I write on his Twitter, he often replies. As long as they're interested in what you're talking about.

      Heck, that gives me an idea - can we start Twittering to people like Chris Martin and Al Dimeola to get a campaign of sorts started? People who might actually listen?
       
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    20. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I like it, BUT I think it would be better if these people were contacted by the people doing the research, like @Justin De Moss. It would seem more official and have more clout behind it.

      These celebs get loads of letters, so the more we can make 'our' stand out the better.

      What do you think?
       
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    21. Mister Muso
      Creative

      Mister Muso Member

      Location:
      Scotland
      Tinnitus Since:
      2007 / April 2019
      Cause of Tinnitus:
      Loud music
      I guess we shouldn't bother Bill again then... (n)
       
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    22. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I wonder if Oprah Winfrey has ever had a family on of someone who has committed suicide due to tinnitus?

      Oprah Winfrey -

      Oprah Winfrey’s Mailing Address

      Oprah Winfrey
      c/o OWN: The Oprah Winfrey Network
      1041 N. Formosa Ave.
      West Hollywood, CA 90046

      Oprah Winfrey Magazine’s Email Addresses
      • oprah@oprah.com
      • oprahmagstoryideas@hearst.com
      • coscustserv@cdsfulfillment.com
       
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    23. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      I think most of the time we have to go through their managers first... Yes I can try to think of some things, this is something I've been wanting to do for a while...
       
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    24. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I would keep it just to tinnitus for now. No need to dilute things. Be specific.

      If we get someone on board for tinnitus then we can go after hyperacusis.
       
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    25. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      You will have to go through their managers first, hence the intended person may never see a letter etc.

      A lot of these stars will be told it's not in their best interest to be seen suffering from this or that illness.

      Reasons of insurance may come into play.

      @Justin De Moss, Osbourne should be on that list of celebs, too.
       
    26. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      @Justin De Moss,

      Another thing you could look at is getting on board a documentary filmmaker (the bigger the better) to highlight your research. But in order for it to have an impact it would need to show the true devastation that tinnitus can cause, i.e. suicide and 24/7 torment.

      Louis Theroux would be a good one to contact as he likes off the beat topics generally. The documentary would have to be about tinnitus per se and the search for a cure second I think.

      https://www.facebook.com/LouisTheroux/
       
    27. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
    28. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
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    29. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      I am going keep plodding away and writing letters when I have time. I’ll make the time.

      I need to learn how to use Twitter. I am an idiot when it comes to technology... old school.

      If everybody pitches in something may happen... who knows...

      I am going to keep writing letters... I don’t care if it’s futile... at least I tried.

      Peace out.
       
    30. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      That's what I said. The managers. I've been thinking that they probably don't want to depreciate their image with the suffering, I think it's more likely for them to just donate.
       
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