What Have You PERSONALLY Done to Help Raise Awareness!

Discussion in 'Awareness & Fundraising' started by valeri, Jan 6, 2016.

tinnitus forum
    1. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Self explanatory question that still pisses me off after reading all the winging and complaining on this forum!
      10K+ members still happy to sit back and do shit ass!
      And please don't tell me we are minority!
      Even if we are there's still at least few millions of us!
      So many attempts to do something, FB, Twitter, petitions... nothing, just a load of bull day in day out!

      So let's hear your personal achievements!
       
    2. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Take BTA Leaflets out to doctors and to audiologists and give them out in town centres with TT leaflets.
      Forum mentor on BTA giving advice by forum,phone and email.
      Ambassador and benefactor on TT giving advice by phone and PM.
      Will be doing a BTA collection on February.
      Run a tinnitus group weekly.......lots of love glynis
       
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    3. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      My friends, family and coworkers are more aware of this condition than they would be otherwise, and some of them have stepped up their ear protection as a result.
       
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    4. ceauses97
      Speechless

      ceauses97 Member

      Location:
      Norway
      Tinnitus Since:
      06/12/15
      Cause of Tinnitus:
      loud music/chemotherapy/hypercalcemia
      i burned my sisters headphones. does that count?
       
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    5. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      I've decided that I'm going to write a book that will give, as much as possible, objective information about tinnitus. My novel writing has bogged down because my creative process has suffered from the noise, but I'm still capable of writing nonfiction.

      Most of the books available about tinnitus include dubious remedies, misleading promises of cures, and other such nonsense. I just want people to know what they or a loved one will perhaps be dealing with, whether they are faced with very mild or severely intrusive tinnitus. I want to balance the hope people need in dealing with this affliction with the reality of tinnitus.

      I came to this decision today after a long conversation with a friend who has known me for several years. She says she has a better understanding of tinnitus based on my experience that I've shared with her since I got tinnitus.
       
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    6. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      I have attempted to talk to various admin, technicians, deans, presidents, etc at my college to get them to pay attention to volume levels in class (especially with video viewing and whatnot) and even sent a petition around to my peers to try to get the school to think about setting a volume db limit or something. Sadly, I was eloquently and diplomatically told to f*** off...
       
    7. jss
      No Mood

      jss Member Benefactor

      Location:
      USA
      Tinnitus Since:
      June 2013
      You can donate all the time, information, research, education, support etc .. In the last 20 years where that has gotten the suffering tinnitus community?

      The only thing that does any talking in the corrupt medical world we live in is....... money.

      This is a perfect platform to start to raise money through donations and thus put that into serious publicity or research work. Unfortunately unless a millionaire suddenly decides to donate a few million dollars it comes down to membership numbers. 10,650 members is nothing and the donations I would assume are not enough to get the cash needed to really make an impact. Look at the majority of the posters here and you will see few benefactors. Thats the bottom line.....sad but true.

      This is and could be a much more powerful platform than the ATA could ever be but it lacks the proper funding. Thats why I donate here and will continue to.

      I believe in the management of this site and their dedication.
       
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    8. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      @glynis-harbron Wish you lived in Boston I'd love to join your group ...Keep up the good work
       
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    9. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      It does indeed.
       
    10. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Thank you @Carlos1..lots of love glynis
       
    11. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      In my opinion, you are asking the question in an inverted fashion: it is not the folks who have achieved something, it is the ones who haven't you want to get hold of - so to speak...

      But... since you ask - here is what I have personally contributed with:
      • I have authored the 1st, 3rd, and 4th highest ranking posts here on TinnitusTalk (out of almost 150,000 posts).
      • I have been part of Team Trobalt: the hidden forum here on TinnitusTalk counts some 800 posts.
      • My personal e-mail inbox counts some 300 e-mails from leading researchers and CEOs of otology pharma companies.
      • I have pioneered the first ever Q&A-session with an otology pharma (Auris Medical AG): www.tinnitustalk.com/threads/auris-medical-the-first-corporate-sponsor-of-tinnitus-talk.11325
      • I was part of the background work that led to a sponsorship with Auris Medical: www.tinnitustalk.com/threads/auris-medical-the-first-corporate-sponsor-of-tinnitus-talk.11325
      • I have tracked down a number of pieces of research information pertaining to developments e.g. OTO-311 or the Autifony Therapeutics trial (see: www.tinnitustalk.com/threads/otonomy-starting-phase-1-trial-in-2015-for-tinnitus.9017/#post-93572 as an example).
      • I have made contributions to Team Awareness, and, I frequently contribute to the social media updates where @Markku and myself have developed a refined approach so as to achieve very high ratings for the posts that are done (e.g. compare with a FB-page such as GSK or Pfizer which have some 75 times more followers...).
      • I am part of the early stages of an EU based research initiative. More on that later.
      • Besides that, well, I am the highest ranking member in terms of points here on the forum. I guess that must mean something?
      Addendum: This is a support forum - and so perhaps not everyone is in a place where they are able or willing to contribute...
       
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    12. jss
      No Mood

      jss Member Benefactor

      Location:
      USA
      Tinnitus Since:
      June 2013
      This is the kind of passion and dedication that will make a difference. Keep going Glynis, your a blessing.
       
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    13. jss
      No Mood

      jss Member Benefactor

      Location:
      USA
      Tinnitus Since:
      June 2013
      If we only had 25-50 others like you, with that type of brilliance it would start to get more attention. God Bless!

      At this point all I can contribute are donations. I just did today as a matter of fact.
       
    14. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Thank you @jss ,
      I have devoted my life to help people with tinnitus and menieres and constantly trying learn more what is on offer world wide.....lots of love glynis
       
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    15. Phil-O

      Phil-O Member

      Location:
      Lancashire UK
      Tinnitus Since:
      02/2015
      Hi @glynis-harbron,
      Your help and advice appreciated as always. Best wishes Phil
       
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    16. RaZaH
      Not amused

      RaZaH Member Benefactor Team Tech

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      I do stealth work ;)
       
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    17. Bran350
      Depressed

      Bran350 Member Benefactor

      Location:
      East Coast USA
      Tinnitus Since:
      08/2004
      Cause of Tinnitus:
      Acoustic Trauma
      Did a presentation on tinnitus at my college and handed out earplugs and pamphlets. Surprising how many people have no clue. I'd like to do more. I try to explain the condition to musicians, as my dad was a musician before he received tinnitus. Recently, I explained the condition to leaders of a praise and worship band and how it can affect many people, but they continue to play overly loud music in everyone's ears every week. I have found that some listen and others don't. I guess all we can do is continue trying.
       
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    18. RaZaH
      Not amused

      RaZaH Member Benefactor Team Tech

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      I tell people all the time that they should not smoke, still they don't stop?
       
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    19. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      It's not so simple I think. My mom has smoked for years, only quitting during the time she was pregnant with me. She's tried to quit a total of 27 times ending in failure. It is really really really hard to quit smoking. It's an addiction and addictions are hard to fight against.

      But good for your for telling people to stop smoking because most people don't even bother with it even when it comes to friends and family.
       
    20. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      Hi what are your own achievements?
       
    21. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      You can ask @Markku!
       
    22. Tamika
      No Mood

      Tamika Member Benefactor Team Awareness

      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      One loud indoor concert
      Great work! I was one of those clueless ones. I'd never seen any warnings - just took one concert. I've quizzed friends and they didn't know the music venue risk either. I tell anyone that will listen, especially those with children. A friend recently took her grandchildren to a 'kiddies disco'. It was so loud, that after what I had told her she beat a hasty retreat out of there with the children and explained to them why.
       
    23. RB2014
      Confused

      RB2014 Member Benefactor

      Location:
      US
      Tinnitus Since:
      12/2014 became noticable
      Cause of Tinnitus:
      Loss of hearing and then stress and anxiety
      I donated to the Stanford cure for hearing loss and had co-workers join me. I started a thread in this section trying to get people to join me in coming up with ideas to get the word out. I started a thread in rcgroups trying to raise awareness. I emailed the Bill and Melinda Gates Foundation trying to make a case for them to help hearing loss and tinnitus with no response. For a while I was on a rampage trying to get a message out, but after a while I realized that its not easy getting people's attention. With all of the people that have hearing loss you would think there is more interest, but sadly enough it seems like very few people care until they are personally affected by it.
       
    24. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      @valeri has done quite a bit, she's a constant source of good ideas. She also has a significant amount of self-initiative. Recently, she's on a consistent basis been involved in our awareness efforts. She has drafted messages, engaged in outreach, contacted organizations and influential people, literally made things happen, such as an upcoming guest blog post was all her doing.

      Everyone is welcome to join efforts like these! -> https://www.tinnitustalk.com/threads/tinnitus-talk-teams-—-awareness-research-tech-trobalt.7694/

      Related: it's humbling to see the list of things people have done, above. Keep it going folks! Awesome work everyone.

      Personally, I hope to have made a small difference in some people's lives over the years, either directly by talking with them, or indirectly by having founded this community. And of course just like one of our top contributors to our awareness efforts, @attheedgeofscience, said above, we are working hard to improve our presence on the social media and elsewhere, to allow more people learn about the site & raise awareness of tinnitus overall. Making an impact in these small ways keeps me and hopefully some others here going.
       
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    25. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      I have made my whole family aware of this condition I have also shared tinnitus information on social media.
       
    26. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Related, if anybody is interested, can message me directly here on Tinnitus Talk...

       
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