FounderAs many of you know, it's that time of year where organizations try to raise awareness of tinnitus.
In 2016 and earlier, the British Tinnitus Association held the awareness week in the UK in February, whereas in the US it was held in May by the American Tinnitus Association.
Back then, I remember thinking, "wouldn't it make sense to make the week occur at the same time on both sides of the pond?"
Lo and behold, a set of discussions later, in 2017, the week was "merged" — ATA and BTA were now holding it at the same time in February.
Throughout last year we planned for expansion of the week with BTA and ATA. The idea was to get more organizations joining and collaborating together. And that we did, the response from other organizations has been nothing but phenomenal. We put together the Tinnitus Week website to feature the organizations taking part and to list their events.
All of the organizations are doing the best they can, with the limited resources they have. To us this is a fantastic stepping stone to next year's Tinnitus Week, we can see what works now and what can be improved. This open line between the organizations also helps with other future awareness projects (which can happen outside of Tinnitus Week, mind you). I don't see anything but positives coming from this. Of course we would like to run some dramatic awareness campaigns, something that's never been attempted before, and maybe attracting some media attention in the process, but easier said than done. That doesn't mean we aren't trying to push the envelope though.
I realize it may not seem much when we run a survey and together with the other organizations ask some questions (side note: BTA, for one, is doing a great deal more though, their Kids Talk Tinnitus campaign is great, and they have also secured some media attention for the week - but do not forget that their organization is much older and much bigger; they have several full and part-time staff), and speak about tinnitus on social media, but even that is more than the community at large is doing. It's very hard to get any support for tinnitus campaigns on social media; a big part of the community doesn't even like our Facebook page or follow us on Twitter, let alone retweet or share our posts. But still some of you somehow expect us to do everything by ourselves and organize the world's most effective awareness campaigns. This just doesn't compute with me. It seems like the tinnitus organizations are sometimes held up to impossible standards and expectations.
Parts of the tinnitus community can indeed sometimes appear quite demanding and opinionated (of course not everyone!) considering how little many are willing to put in in the form of volunteering their time and skills.
Recently someone said that the Tinnitus Week is completely useless and a waste of time. This came from the mouth of a tinnitus sufferer. No question about it, I was triggered.
My response in kind to that is: Instead of complaining, do better. Activate yourself. Activate your inner activist. Become a part of our efforts, or any of the other organizations for that matter, and put in some blood, sweat, and tears. Hasn't there already been enough accusing of tinnitus organizations failing to do anything meaningful? Isn't it time those not happy with the efforts actually showed some effort themselves besides just criticizing?
I don't think everyone realizes what it really means to put in hours of volunteering time pretty much every day, for years on end, especially on top of your full-time day job. Yesterday @Steve had a full day at his own company, yet he spent 3 hours finishing our Significant Other survey due for launch tomorrow (thank you to those who helped with feedback, by the way!). @Samir was studying 8 hours straight, after which he helped with the survey for more than 4 hours, final message from him clocking in at 2 am his time. I was in contact with BTA, ATA, Better Hearing Australia throughout the day, handled Twitter, posted on Facebook, created a newsletter, updated Tinnitus Talk.
I've also been pushing the Thunderclap with Emily from BTA, trying to connect with influencers who may support the campaign. The result is that now we have over 1,000 supporters, with social reach four times that of last year. The more contacts we make, the better the outlook is for future awareness campaigns as well. It's always easier when we don't have to start from scratch.
Besides normal chats, we've had a weekly Skype voice chat on Saturdays for a long time now. Most Saturdays they last around 3 hours. This time Steve could be spending with his fiancée or Samir could be chilling after a long arduous week of studying. Instead all of us wake up and come to Skype first thing in the morning, fresh and all.
You may have the all-time best awareness idea. Can you make it into more than wishful thinking? Can you actually execute it or help others execute it?
On our side, @Steve, @Samir, @glynis and I have by far given the largest effort to Tinnitus Week. I've personally sent 427 Tinnitus Week related e-mails thus far in 2018, that's an average of over 10 e-mails per day. I don't even dare to go back to 2017 and see all the back and forth in that time. But let's just say that I genuinely think we're carrying our weight, and it's not like we can solely focus on Tinnitus Week, we have other things needing attention too; for example, this March is a TRI conference which we need to prepare for, too. Steve will be a panelist in one of the sessions.
Nothing says you can't orchestrate your own awareness week, or your own awareness project.
A good example is that of @Makrohn - being a filmmaker, he had an idea of a tinnitus documentary, where he films himself, while including bits of other sufferers. I reached out to him about his idea, soon thereafter we had a Skype conference call among the four of us. Now the project is slated for this spring.
One can tell that Makrohn is the kind of person who practices what he preaches, executes, collaborates. He realizes complaining doesn't really achieve anything if you aren't willing to be part of the change yourself.
We do have to improve in one area, soon, and that is trying to find and publicly list "bite-sized" actionable items people can volunteer to do. We realize it's not really feasible to expect most people being able to commit long-term like I, @Steve, @Samir, @glynis, @Karen and @erik have done (not forgetting many of our lovely regular contributors without whom we wouldn't be what we are), so offering ways to help with less commitment and time required can be helpful and allow us to do more.
But if you're ready to take it a step further than a small task here and there, spend your Saturdays with us, have a skill or two that you want to share, and fancy being involved in our core group where we keep trying to do our best for the tinnitus community, to raise awareness and to connect with researchers, we look forward to getting your PM.
PS.
I understand tinnitus by its nature presents its own difficulties; a tinnitus sufferer has to be "wired" in a certain way to want to volunteer their time for tinnitus projects. Because most people unsurprisingly want to spend as little time dealing with tinnitus as possible. Then there's also the fact that tinnitus can be so debilitating that surviving each day is work plenty enough. So we certainly have our challenges set for us, don't we. Try to remember that if you are frustrated and ready to shout at us and the other organizations
In 2016 and earlier, the British Tinnitus Association held the awareness week in the UK in February, whereas in the US it was held in May by the American Tinnitus Association.
Back then, I remember thinking, "wouldn't it make sense to make the week occur at the same time on both sides of the pond?"
Lo and behold, a set of discussions later, in 2017, the week was "merged" — ATA and BTA were now holding it at the same time in February.
Throughout last year we planned for expansion of the week with BTA and ATA. The idea was to get more organizations joining and collaborating together. And that we did, the response from other organizations has been nothing but phenomenal. We put together the Tinnitus Week website to feature the organizations taking part and to list their events.
All of the organizations are doing the best they can, with the limited resources they have. To us this is a fantastic stepping stone to next year's Tinnitus Week, we can see what works now and what can be improved. This open line between the organizations also helps with other future awareness projects (which can happen outside of Tinnitus Week, mind you). I don't see anything but positives coming from this. Of course we would like to run some dramatic awareness campaigns, something that's never been attempted before, and maybe attracting some media attention in the process, but easier said than done. That doesn't mean we aren't trying to push the envelope though.
I realize it may not seem much when we run a survey and together with the other organizations ask some questions (side note: BTA, for one, is doing a great deal more though, their Kids Talk Tinnitus campaign is great, and they have also secured some media attention for the week - but do not forget that their organization is much older and much bigger; they have several full and part-time staff), and speak about tinnitus on social media, but even that is more than the community at large is doing. It's very hard to get any support for tinnitus campaigns on social media; a big part of the community doesn't even like our Facebook page or follow us on Twitter, let alone retweet or share our posts. But still some of you somehow expect us to do everything by ourselves and organize the world's most effective awareness campaigns. This just doesn't compute with me. It seems like the tinnitus organizations are sometimes held up to impossible standards and expectations.
Parts of the tinnitus community can indeed sometimes appear quite demanding and opinionated (of course not everyone!) considering how little many are willing to put in in the form of volunteering their time and skills.
Recently someone said that the Tinnitus Week is completely useless and a waste of time. This came from the mouth of a tinnitus sufferer. No question about it, I was triggered.
My response in kind to that is: Instead of complaining, do better. Activate yourself. Activate your inner activist. Become a part of our efforts, or any of the other organizations for that matter, and put in some blood, sweat, and tears. Hasn't there already been enough accusing of tinnitus organizations failing to do anything meaningful? Isn't it time those not happy with the efforts actually showed some effort themselves besides just criticizing?
I don't think everyone realizes what it really means to put in hours of volunteering time pretty much every day, for years on end, especially on top of your full-time day job. Yesterday @Steve had a full day at his own company, yet he spent 3 hours finishing our Significant Other survey due for launch tomorrow (thank you to those who helped with feedback, by the way!). @Samir was studying 8 hours straight, after which he helped with the survey for more than 4 hours, final message from him clocking in at 2 am his time. I was in contact with BTA, ATA, Better Hearing Australia throughout the day, handled Twitter, posted on Facebook, created a newsletter, updated Tinnitus Talk.
I've also been pushing the Thunderclap with Emily from BTA, trying to connect with influencers who may support the campaign. The result is that now we have over 1,000 supporters, with social reach four times that of last year. The more contacts we make, the better the outlook is for future awareness campaigns as well. It's always easier when we don't have to start from scratch.
Besides normal chats, we've had a weekly Skype voice chat on Saturdays for a long time now. Most Saturdays they last around 3 hours. This time Steve could be spending with his fiancée or Samir could be chilling after a long arduous week of studying. Instead all of us wake up and come to Skype first thing in the morning, fresh and all.
You may have the all-time best awareness idea. Can you make it into more than wishful thinking? Can you actually execute it or help others execute it?
On our side, @Steve, @Samir, @glynis and I have by far given the largest effort to Tinnitus Week. I've personally sent 427 Tinnitus Week related e-mails thus far in 2018, that's an average of over 10 e-mails per day. I don't even dare to go back to 2017 and see all the back and forth in that time. But let's just say that I genuinely think we're carrying our weight, and it's not like we can solely focus on Tinnitus Week, we have other things needing attention too; for example, this March is a TRI conference which we need to prepare for, too. Steve will be a panelist in one of the sessions.
Nothing says you can't orchestrate your own awareness week, or your own awareness project.
A good example is that of @Makrohn - being a filmmaker, he had an idea of a tinnitus documentary, where he films himself, while including bits of other sufferers. I reached out to him about his idea, soon thereafter we had a Skype conference call among the four of us. Now the project is slated for this spring.
One can tell that Makrohn is the kind of person who practices what he preaches, executes, collaborates. He realizes complaining doesn't really achieve anything if you aren't willing to be part of the change yourself.
We do have to improve in one area, soon, and that is trying to find and publicly list "bite-sized" actionable items people can volunteer to do. We realize it's not really feasible to expect most people being able to commit long-term like I, @Steve, @Samir, @glynis, @Karen and @erik have done (not forgetting many of our lovely regular contributors without whom we wouldn't be what we are), so offering ways to help with less commitment and time required can be helpful and allow us to do more.
But if you're ready to take it a step further than a small task here and there, spend your Saturdays with us, have a skill or two that you want to share, and fancy being involved in our core group where we keep trying to do our best for the tinnitus community, to raise awareness and to connect with researchers, we look forward to getting your PM.
PS.
I understand tinnitus by its nature presents its own difficulties; a tinnitus sufferer has to be "wired" in a certain way to want to volunteer their time for tinnitus projects. Because most people unsurprisingly want to spend as little time dealing with tinnitus as possible. Then there's also the fact that tinnitus can be so debilitating that surviving each day is work plenty enough. So we certainly have our challenges set for us, don't we. Try to remember that if you are frustrated and ready to shout at us and the other organizations
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