Is There Something We Can Do?

Discussion in 'Awareness & Fundraising' started by Mario martz, Apr 26, 2016.

tinnitus forum
    1. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Hi,

      I know I'm not the first one who have had this idea before...

      But I'm just getting tired of the idea to come to this forum to complain everyday or see others complain, or see new people joining every day!

      Can we just raise money or make "noise" (lol) to literally at least demand a relief, not even a cure, just a temporary relief, a long term medication, whatever, can't believe we are so much with this condition, and nobody would do anything.

      Together we can raise a good amount of money, I'm a graphic designer I can design a site, the social media, and make an impact, I literally wouldn't mind to donate money everyday or raise money in school.

      Obviously an amount would go to this forum, I don't believe we need to invest or help BTA or an awareness campaign, since they have been around for a while and haven't really helped anyone.

      I'm pretty sure that together we can make a change and demand some sorta relief :)
       
      • Agree Agree x 5
    2. Sara_Bond
      Cool

      Sara_Bond Member Benefactor

      Location:
      France
      Tinnitus Since:
      28.10.2015
      Cause of Tinnitus:
      Noise exposure
      @Mario martz

      I was thinking the same, was talking about that to a friend of mine, who has some relatives in the music industry. That's enough, we need a cure, people are really suffering, and on top of that, there's no awareness campaigns. Otherwise we wouldn't be there complaining!
      I am in.
       
      • Like Like x 1
    3. Starlord

      Starlord Member

      Location:
      St. Petersburg, Florida
      Tinnitus Since:
      02/2016
      Cause of Tinnitus:
      Noise induced
      Maybe something along the lines of this...

      What Does a Migraine Feel Like? - The...


      What it's like to be in the shoes of a person with tinnitus +/- hyperacusis. This actually made me tear up a bit because having tinnitus has made me feel so isolated, alone, and that I'm not taken seriously.

      But then again I'm sure we have all played a sound similar to our T for a friend for a few seconds, but that does not compare to actually experiencing it constantly. I also feel a same high frequency external sound is not even in the same league as our internal sounds, nor does it cause the same emotions and distress associated to it.

      The people in this commercial were lucky that they could take off the VR headset once things got bad, versus people suffering could not. Just the parallels that I saw compared to our condition.
       
      • Like Like x 1
    4. 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
      Good question @Mario martz,

      In the Awareness & Fundraising category you will find threads similar to yours.

      You will also find in the threads why it isn't as simple as "demanding a relief," it just doesn't work that way. There is constant research going into tinnitus, more so than ever before. You might want to read our covering of the Tinnitus Research Initiative 2016 conference.


      I want to start this off by making you aware that there are a number of other, arguably worse conditions than tinnitus, that have much more funding going around, with no respite available.

      Two examples:

      ALS

      The Ice Bucket Challenge raised some $115M for ALS. No good treatments. No cure.

      Parkinson's

      Michael J. Fox's Foundation (Parkinson's):
      89% of their income goes to research programs. In 2010 it was $55M, 2011 $62M, 2012 $63M, 2013 $77M and 2014 $76M.

      MJFF funded $333M worth of research during 2010-2014.

      Result so far: no cure, and, as far as I know, treatments are lacking as well (there are some drugs to ease the symptoms and options such as Deep Brain Stimulation that can help with the disabling motor symptoms).

      Granted, research can take its time and who knows how things progress over the next years.


      But tinnitus? American Tinnitus Association can fund tinnitus research annually in the ballpark of $300,000 - $400,000 (someone correct me if I'm wrong, I don't have the exact numbers in front of me).

      NIH (National Institutes of Health in the US) has funded Tinnitus Retraining Therapy research with several millions of dollars. Without a doubt the largest set of funds any tinnitus therapy modality has ever received.

      All the while there might be some missed opportunities (warning: you might scratch your head after realizing how much the US government spends on tinnitus related disability payments and how little love tinnitus gets)

      As a forum collective, there is little to no chance we would be able to run a fundraising campaign, one that makes a major difference for research, that is. Put up a fundraising page and they come? No, it doesn't work like that. Even if we devoted maximum effort on our end to advertise such a campaign, it would be like trying to cross the Atlantic Ocean with a wooden raft. This of course is fully dependent on what would be your goal for such a fundraiser, but even $100,000 would be very far-fetched, let alone a million (ATA's yearly budget!).

      What makes matters even more difficult, is that the healthy population have little empathy for tinnitus. Unlike the Donkey Sanctuary, which had an income of a whopping £32.4M in 2014.

      Not to mention that a significant majority of those experiencing tinnitus deal well with it. Many would rather spend their money on their family than donate to tinnitus causes.


      That said...

      What you can do...

      Awareness and advocacy work is important. A good example is @attheedgeofscience: he's written several excellent in-depth articles in a bid to raise awareness. He has even contacted a department of the European Union (regarding noise regulation, hearing protection at music venues, etc). There are other excellent awareness volunteers here on Tinnitus Talk too — we should be doing a write-up on them soon.

      Awareness and advocacy work never goes to waste. Every single person whose thinking can be shaped, who can be made aware of the devastating effects of loud noise (and other causes of tinnitus) is a win in my book. Every single person who feels alone with this condition and needs peer support and is provided with it, is a win in my book. Awareness and advocacy work benefit both non-sufferers and sufferers.

      You could join one of the Tinnitus Talk Teams to volunteer your skills.

      You can like our Facebook page and share & like the stories we post there (don't forget our Twitter either!)

      There is of course loads more that you can do but it's good to start from those smaller, more realistic things.


      Lastly, you should talk about tinnitus! In my experience, the majority of people don't want to talk about it with their friends, let alone acquaintances. It's difficult to raise awareness and make a difference in any capacity when people rather keep it to themselves than make some noise...!
       
      • Agree Agree x 1
    5. 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
      There's something like this made by us:



      I like "The Noise" a lot too:
       
      • Like Like x 1
      • Agree Agree x 1
    6. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I contacted pretty much every media Chanel here in Australia with a letter showing an ugly side of tinnitus but only received few replies along the line: thank you for contacting us, we will forward your story to out producers bla bla bla....
      Simply it's not sexy enough:(
       
    7. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      thank your for your respones
      @Markku thank your for your reply, ill read the whole thing in a minute.

      well to be honest, i think we have great ideas and all,
      and i get it, there are "worst illness" out there and thats why they dont care so much,
      but thats because they dont know what its like.
      i think via facebook and social media we can do a great campaing.
      i dont wanna show off or big talk, but i can manage to contact big industry name.

      they need to help, since music was the problem in the first place haha.
      i cant believe all the millions they make out of music festival around the world,
      personally if my problem has to do with music, well lollapalooza, coachella, fun fun fun festival and others
      owe me big time hahaha.

      i think if we come together with a shocking but brilliant idea and it has potencial to become viral we can make a movement, but to be honest i wouldnt know where to send the money to...?
      the only thing i would put my trust to is...
      https://decibeltx.com/

      i know habituation is the key so we can go on and live a happy life.
      but there are people who have it worst, and we can not just settle and say "well i hope they habituate too"
      i think a pill that at least gives you a 5 hour relief would be the paradise,
      and im not saying i have it bad, im speaking for everyone here who everyday have to live a constant battle,
      life is not a war against noise, we cant not this situation be ignore.
      music festival and concerts around the globe is the biggest business in the world right now.
      the world needs to know about the harms, and the other side of the coin.
       

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