Raising Awareness Using Social Media & Celebrities

Discussion in 'Awareness & Fundraising' started by Bill_, Jan 3, 2019.

    1. Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      Since I've been fighting with a serious exacerbation of tinnitus right now I feel the urge to somehow help research for a possible cure advance. So far the efforts made by ATA and/or BTA (don't even get me started on our "German Tinnitus League") don't really seem to have a big effect which is no surprise if you consider that the ATA is PROUD to have funded $6 million - SINCE 1980!!! That's roughly $160.000 a year which is close to nothing on a "serious research" scale.

      I really think we should take things into our own hands. There's a few celebrities who are known to have tinnitus. Maybe we can write an open letter to them and link it on Twitter and try to get it retweeted as much as possible?

      Why don't we try to get Elon Musk to address this issue with Neuralink (I think I read somewhere that they are actually planning something in that direction but focus is on other diseases I think)?

      We all lack silence but when it comes to communicating our matters we ARE actually almost silent.

      So, who's in?
       
      • Agree Agree x 1
    2. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Indeed - and good luck trying to change that, Bill. We've been trying to do that for many years, and so have the other tinnitus organizations. You simply cannot get tinnitus sufferers to even share, retweet, or engage in these things, let alone partake in fundraising. I want you to prove us wrong so badly. Show us that it's possible. Find the magical recipe that gets people engaged and active.

      99.9% of tinnitus sufferers won't do anything when it comes to fundraising for tinnitus research. Cases in example: Danny Boy fundraiser (it raised £5110 from 190 donations, and those 190 donations weren't even by unique donors, instead a couple of members donated very generously multiple times --- all this whilst the page was visited by over 60,000 tinnitus sufferers). @attheedgeofscience and @Ed209 recently spent several hundreds of dollars on Facebook ads to target tinnitus sufferers to promote the research fundraiser of Dr. Josef Rauschecker; result was ZERO new donations. Nil. So far Rauschecker's fundraiser has raised a bit over $2K of the $50K goal.

      Time and time again we read about suggestions "if every tinnitus sufferer donated $10 / year, we would be golden and there would be so much money for supporting tinnitus research"

      It's not based on reality - it just isn't.

      It's much easier to raise funds for Donkeys:



      So what will you do Bill? Are you going to write that open letter? Are you going to execute and lead on this Twitter campaign?

      I know we haven't given up and will gladly help where we can - but we really need more people to actively help with these things. Creating a thread with suggestions is one thing, taking the charge is completely another.

      I myself have my hands full with getting ready for the Tinnitus Week 2019, organizing and developing the website, trying to get tinnitus stories from people, and editing the Joan van Baarle interview @Hazel did last week (which is quite difficult as I need Hazel's help with the editing as I don't speak Dutch), but I'll find time to help with other things too if a worthy cause arises.
       
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    3. AUTHOR
      AUTHOR
      Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      Hey Markku,

      I will try to do my best. I have already reached out to Joe Rogan and asked him to do a podcast with someone from tinnitus research. Do you have suggestions who might be willing (and eloquent enough) to do that? I live in Germany and don't have that many contacts in the US - but I think it's best to target US audience as it's probably the biggest and most of the promising research is going on there.

      I could try to write a draft for an open letter. Since English isn't my first language it would be great if someone could proofread.

      I think the main problem consists of 2 factors:

      1. If you have tinnitus your main goal is to forget about it as much as you can - so you probably don't engage much unless you have really severe tinnitus (take me for example - I have had tinnitus for 21 years almost but only last week it got so bad that I feel the urge to really DO something)

      2. If you don't have tinnitus it's hard to relate. Play a tinnitus-like tone to anyone and they will admit that it's annoying but you simply can't grasp what it means to really have it INSIDE your head. Anyone can overhear pretty much any sound - as long as it's not in your head.

      I don't have solutions for either point but I have a few ideas that MIGHT work as a starting point:

      1. Using celebrities as spokespersons: You probably won't engage in tinnitus-related forums a lot if you have habituated. So you won't reach a lot of people if you use tinnitus-related channels. But if you use popular channels you might reach far more people.

      2. Not focussing on tinnitus sufferers as potential donators: Sure it sounds likely that someone who has tinnitus will donate to tinnitus research. But is that even true for other matters? Do cancer patients donate to cancer research? I'd doubt that. Maybe target the "other 90%".

      3. Emphasizing not the tinnitus itself (or at least not alone) but the social impact. Suicide rates, loss of work, family etc. might generate more compassion than just "people hearing a sound all the time"

      4. Target military personnel and especially veterans. Especially in the US veterans are highly respected. There's a 80% chance for veterans to have tinnitus. Lets talk to high profile veteran organizations and see if we can get them onboard.

      That's it for now I guess. I'm open to any suggestions!
       
    4. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I'm happy to help with that. Draft it up - I can usually make a silk purse out of a cow's ear.

      Agree - ATA seems to raise a substantial portion of its income from donations.

      Tinnitus sufferers love to talk about their tinnitus. People flocked to the posting on Josef Rauschecker and jabbered away, no one donated and most didn't even realize it was a fundraiser!

      Income could be a consideration there, but the VFW has a great website and is clearly dealing/communicating with issues.

      I'm willing to help, but I'm not a marketer or sales person. I left industry almost 10 years ago - spent my entire career in R&D and unfortunately am not that savvy with social media. I worked hard and long hours, did a lot of business travel and like many of my co-workers did not have time to get into social media.

      The general public doesn't know what tinnitus is. They've never heard of it. In my world, this would have meant the marketers had to create a market, so adverts for initial introduction of a product were more educational in nature and focused on brand recognition. So why you need the product and the name of the product you need.

      There are others on this forum who feel efforts to raise awareness should be more hard hitting.

      Oh, and one other thing. Being limited to social media may limit access. People in the age range that you want to reach may still be listening to the radio and watching TV.
       
      • Like Like x 1
    5. another sean
      Studious

      another sean Member Benefactor

      Location:
      Los Angeles
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Long duration of low audio
      I think what past attempts lack is doing something that engages people. You need to tell a story, draw people in, it literally has to be like a movie or commercials in today's world. It's like the movie Philadelphia. It opened the eyes and hearts for a lot of people when it came to HIV. I'm trying to make a cinematic narrated piece but work is taking a lot of my time unfortunately and my back is still healing from an injury. YouTubers and Twitch streamers put out better quality content than what I've seen on tinnitus. The only decent tinnitus piece I've ever seen was on Gaby and it hit me right in the gut. Strong. Concise. Powerful. Gotta sell this shit.

      I see better made videos of people spending their fortune on Barbie dolls on BarcroftTV. Maybe someone here wouldn't mind contacting BarcroftTV and having them do a piece on them. The more extreme case, the more likely it will happen and I think the they are based in the UK so someone from the UK would have a higher chance as well. Telling our story on a channel with 6 million subs wouldn't be too bad for awareness.
       
      • Agree Agree x 1
    6. AUTHOR
      AUTHOR
      Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      Ok, give me a few days, ok?

      Maybe that's the issue then? How can you not know it's a fundraiser? Needs better communication then!

      Ok, should we draft up an e-mail to them then?

      I know a thing or two about social media marketing though. I'm sure there's others around here, too.

      Yeah, I agree, but the question is how you depict your product. Take Coca-Cola. They never talk about what Coca-Cola is (high sugar soda drink). They only talk about the emotions that come from & with it. That's what we should do with tinnitus imho.

      While this is certainly true the cost-benefit-ratio for tv/radio ads is waaaaaaaaaaays worse than for social media. It literally costs hundreds of thousands of dollars to place a tv ad. Not worth it imho.
       
    7. AUTHOR
      AUTHOR
      Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      I totally agree with you. Remember that Rick & Dick Hoyt video? Makes me cry every single time I watch it. I don't want to sound heartless or anything like that but in order to raise awareness you HAVE to show the tragedies around the suffering behind all this.

      Do you need any support with this?
       
    8. david c

      david c Member

      Tinnitus Since:
      01/2012
      I think a big part of the problem - apart from the fact that tinnitus is competing with many other charities for donations - is that most tinnitus sufferers don't see their donations as going towards real, innovative research which is going to make a difference.

      For example, in the UK as you state the BTA is the main player - and has indeed spent six figure sums most years on research. But pretty much none of that has gone on the Biomedical research we need. The vast majority has gone on "management strategies" research which we have literally hundreds of research studies for already and don't need any more.

      I would advocate starting an open letter from UK tinnitus sufferers to the main tinnitus charities - including the BTA and AoHL (Action on Hearing Loss) asking them to work together to establish a Biomedical Tinnitus Research fund which could help fund the research we all need. When tinnitus sufferers see research money going in the right direction they will be more likely to donate.
       
      • Agree Agree x 1
    9. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Oh, yes. You are very right about that. Most consumer advertising in the US at least is pitched at the emotional level. Take Proctor and Gamble for example. They used to advertise their laundry products by showing 2 stacks of the same number of towels, of course the stack washed with their product was 20% taller. They've moved away from that type of claim, which is considered to be a strong claim in the industry. Once they showed a Mom wrapping her happy baby in a soft fluffy towel washed in P&G's product, sales increased.

      So sure, it's very much the emotional aspect of tinnitus that's the issue, the problem is that everyone thinks those of us with tinnitus are over-reacting to it. It's invisible and it's been said many times that unless you have tinnitus you can't understand what its like. I'm not trying to discourage - it's just something to think about. Probably why telling true stories is best, however many, including celebrities, don't wish to expose themselves or be perceived as a "tragic figure " or "damaged goods".

      The other thing that supposedly works well in consumer advertising is having an expert talk about a product, especially if it's therapeutic. Dentists talk about strengthening enamel or recommending a certain brand of toothpaste for sensitive teeth.

      Also, there's been concerns raised here by Tinnitus Hub about scaring children.

      Yes, but there may be other military associations as well. I can look into that, my son is in the US Army.

      Cable channels are usually less than major networks. Fewer restrictions as well. Is it Neilson that would be able to say what time and channel the tinnitus age range (60-70 year olds) would be watching? No matter, tbere's no budget for a TV advert. It makes me sick though thinking of the resources available in major corporations.
       
    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I agree, it could have been the design of the ad for example. The call to action was small compared to a big picture of the researcher - and why would anyone be expected to recognize him?

      On the other hand Eddie Clarke ran a similar ad on his website and he actually engaged with those responding, explained the condition, etc. Still no one donated.

      So, look around and educate yourself so you see what we're up against.

      You got it :)
       
    11. AUTHOR
      AUTHOR
      Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      I think @another sean is on the right path with his idea. We need audiovisual content that triggers emotion. Heck, I have had tinnitus for 21 years now (although only the last 3 years were a problem) and I have no idea who Josef Rauschecker is let alone having any idea he was doing a fundraiser. Did you know what ALS was before the Ice Bucket Challenge? I'd bet you didn't! I still don't know exactly what it is today. But I DO know that the Ice Bucket Challenge worked pretty well to raise awareness. Why? Because it wasn't about ALS. It was designed to raise awareness FOR ALS but the content itself wasn't about ALS AT ALL.
      I think that's the way to go.
       
    12. JohnAdams
      Sunshine

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      What awareness are we raising? How bad tinnitus sucks? Why aren't we raising awareness that IGF-1 injections into the ear can reverse hearing loss in humans?
       
    13. AUTHOR
      AUTHOR
      Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      That's cool. But as long as that hasn't been proven to be an effective treatment against tinnitus on a larger scale I think we shouldn't just lean back and wait.
       
      • Agree Agree x 1
    14. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Hazel spent countless hours interviewing Gaby's mother. @Markku is spending countless hours editing this work along with the countless hours with all the other projects going on for Tinnitus Week. @Steve spent countless hours traveling and interviewing the latest treatment method for tinnitus.

      @TuxedoCat your contributions are endless and impress and motivate me.

      How do we not give up? Many have left like @Ed209 and @attheedgeofscience. Why? I understand why.

      The ATA lost a HUGE opportunity after that horrible interview - stating that MOST tinnitus people are not that bothered by tinnitus - regarding the hit movie A Star Is Born.

      The "tragedies" of tinnitus are suicides. Something I am personally experienced in dealing with mostly being shunned for talking about "it". Mostly because no matter who it is must have had other "issues" and so tinnitus is never mentioned as the cause of death. But I know differently.

      The survivors of suicide are afraid to speak out. They tried only to be squished like a cockroach daring to come out with the lights on. And that hurts beyond words when the "experts" put you down and tell you that you are wrong.
      So we remain quiet and withdrawn.

      Personally I was proud of the amount raised to Danny Boy's fundraiser by @Ed209 and taken over by the BTA to distribute grants for students. That was a big effort on his part and all the people who donated.

      I have said it before. There are way too many "causes" to ask for donations towards tinnitus research.

      Make it simple is always the best policy.

      Not so true. Many people have decided against social media these days for various reasons.
       
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    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Bill_

      Turns out there was a good article recently in the NY Times about US veterans' organizations.

      https://www.nytimes.com/2019/01/04/us/politics/veterans-service-organizations.html

      Just so you are aware, the US Veterans of Foreign Wars didn't like the article but the information is still useful to your interests.

      https://www.vfw.org/media-and-event...019/vfw-calls-new-york-times-article-off-base

      I'll summarize here and try to be brief. The September 11 attack on the World Trade Center in NY seems to be a dividing line between US veteran organizations. There are pre- 9/11- groups and post- 9/11- groups. The pre- 9/11 groups are known as the Big Six and consist of Disabled American Veterans, Veterans of Foreign Wars, the American Legion, Paralyzed Veterans of America, Amvets and Vietnam Veterans of America. The big six represent a large number of veterans that were drafted into service but the numbers are shrinking. They are still a fairly large and well respected group and have clout when lobbying. They also represent a larger portion of income compared to the post 9/11 groups. So fundraising projects look inward to the veteran membership for donations.

      The post 9/11 organizations are smaller and their missions and issues are different. Post- 9/11 veterans volunteered for service and when they leave active duty they join organizations with a mission, education for example, and often to become assimilated back into the community. This is different than the Big Six whose purpose was largely to bring veterans together as a group to socialize and for activism. As a result, the post-9/11 groups are smaller and more agile. And, when it comes to fundraising they look outward, to the community of non-veterans. Probably the most well known of the Post- 9/11 groups is the Wounded Warrior Project. There was a bit of a scandal around this organization's use of funds, however they seem to have overcome it.

      The US Department of Defense is funding a lot of tinnitus research because it's the number 1 disability among veterans and is costing the country billions in disability payments.

      So, depending on what you want to accomplish with US Veterans thru their organizations, different approaches may be required. The Wounded Warrior Project sounds interesting because they have a mechanism for reaching non-veterans and that might be useful.

      TC
       
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    16. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Bill_

      Just checking in. Everything OK by you, Bill? :unsure:

      Tuxedo
       
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    17. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi Bill,

      Just checking in with you to see if you still want to progress the idea of the open letter. If you are busy or can't get to it for whatever reason, I'm willing to take a stab at drafting it and then get your input and perhaps that of a couple of the musicians on the forum. Just let me know where you stand, it's a good idea and I hate to see it die on the vine.

      Best, TC
       
    18. AUTHOR
      AUTHOR
      Bill_
      Insomnious

      Bill_ Member

      Location:
      Germany
      Tinnitus Since:
      04/1998
      Cause of Tinnitus:
      1. loud Concert | 2. loud club | 3. tympanometry
      Hey TC,

      Sorry, I actually am really busy atm but I still think we should give this open letter thing a shot. If you want to go for a draft please do so as I would probably not be able to do so in the next 2-3 weeks!
       
    19. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Bronx N.Y.C
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      The majority of tinnitus patients are dictated by what their mindfulness meditation™ therapist command them to not get involved, stay off tinnitus forums and pay no attention to research.

      The medical community as a whole instructions patients are failing them if they go to these measures.
       

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