Maybe a cure is around the corner with 23 million of our voices SCREAMING OUT for the medical community to solve this puzzle
The following awareness post relating to breast cancer was recently shared on Facebook:
[Note: the pink "circle" was there to begin with; I added just the red one]
As you can see, the post was shared by a private individual, and yet it managed to get a very impressive 25,000 ratings and +100,000 shares...
I doubt if you, or indeed we, here on TinnitusTalk, shared an awareness message relating to tinnitus that it would get more than 200 ratings and perhaps 100 shares. For instance, we shared a message by a celebrity not long ago (Mark Ronson) - and still it only got around 350 ratings all-in-all (ratings/shares combined) - which incidentally is the highest ever by a non-sponsored campaign:
The closest myself, and the rest of [USERGROUP=11]@Team Trobalt[/USERGROUP] ever came to reaching an awareness level similar to the breast-cancer campaign, was when we tried to get a research paper (authored by Prof. Moore) relating to Trobalt shared on the Wounded Warrior Project's news feed (+3 million followers and an authenticated profile):
www.facebook.com/wwp
The reason for contacting the WWP was the overlapping interest between us and them in terms of tinnitus (tinnitus is the #1 reason for disability for veterans of the armed forces). Contacting the WWP proved a challenge (you can't just walk in the "front door" with such an organization; you need contacts). So... I actually ended up liaising with a person who happens to be a friend of former president George Bush. The person can in fact be seen presenting at the inauguration of his library:
Despite such connections, we actually did not succeed. A last attempt involved contacting the CEO of the organization directly - which happens to be the hardest e-mail address we have ever had to crack (much harder than that of the e-mails of CEOs of the pharma companies).
So what is the underlying message so far? Well, if you cannot get those people who you would think would have an overlapping interest in assisting you with your cause, then what?
Perhaps these two members have the right "recipe" for tinnitus awareness:
Well, it's crazy. I hate to say this, but we need more people with tinnitus as only then will they cure it. I know it's horrible, but that's how it is, sadly.
I know its horrible, but i am looking forward to that day.
Indeed, there is no doubt that "generation deaf" is a reality to come, and, as an advocate, I did contact the EU's office for health related matters to make them aware of certain low-hanging fruit initiatives they could implement (who would have expected anything less, right?):
1½ years later, I doubt you will find earplugs handed out at concerts at the European level.
So... the bottom line is: if you cannot enlist the help of organizations, authorities, and those who suffer from tinnitus, I think it is fair to say you will have some degree of difficulty finding 23 million screaming voices of tinnitus. I wish you good luck, at least.
As for myself, this past Friday, I had a one hour Skype session with my primary research contact. The call was a concluding session regarding the early stage planning for a major research initiative at the EU level which will cement tinnitus research at the highest levels. More on that after the Nottingham conference later this month:
https://tri2016.ihr.mrc.ac.uk
Anyway, now you - and others - have a little idea of what advocacy is all about, and, what it takes to make a difference. Looks easy enough on the paper, but, a little harder to carry out in real life...
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