Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

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This is cool. Can you guys do a video of it to share with those on this side of the world? Someone could do little interviews? Something like just using your cell phone?

 

I will be attending,
Tickets booked and paid for
Love glynis x

 

@Steve,
Will you be going the Birmingham tinnitus exhibition in September?
Got my tickets

 

I am pretty sure that I will be going but I haven't booked anything up yet.

 

Brilliant!

 

The BTA Talking Tinnitus Expo is on at Aston University Campus, Birmingham on 15th September. Not much of a walk from New Street Station https://www.tinnitus.org.uk/Event/talkingtinnitus

It looks like it will be a really good event, with a lot of demonstrations of things that can help to manage tinnitus. We could have an informal Tinnitus Talk gathering

Obviously it's not cure related but an opportunity to understand about things that can help while we wait for a cure. I'm personally looking forward to being able to try out a lot of different things, being that I am not the best at my own treatment.

I met with the event coordinator Marcus last week. It's shaping up really well, he has put a lot of effort and thought into how everything will work.

 

Sadly I’ll be at a wedding for this one. @Steve so you know if there will be more in the future

 

Sounds cool, hope you all have a blast!

 

This is a first, so it depends I guess on how it is received if there will be more. I think it will be an excellent event so I imagine it will happen again, seems like a really good opportunity to understand a bit more about lots of stuff.

 

@Steve hi will there be anything related to hyperacusis at the event?

 

I've asked the question, will feed back here when I get an answer.

 

Nothing is planned for hyperacusis, but there will be BTA staff there for anyone to discuss hyperacusis.

 

Anyone else going?

 

Bump!

Looking to shift a prearranged commitment and I'm going.

 

@Elfin,
Brilliant and hope to meet you in person.
love glynis

 

Bought my ticket, I’m really looking forward to this. Thought I’d treat myself to a spa day too, make the most of the weekend x

 

I just don't understand the concept if there is going to be no talk about research.

 

@Angeline,
Brilliant and hope to get a chance to meet in person.

love glynis

 

Just booking a hotel so going to make it a weekend in Birmingham.

Looking forward to going and chatting to some Tinnitus Talk members and BTA staff I have known for a long time...

 

There will be. The latest agenda and information is here; https://www.tinnitus.org.uk/Event/talkingtinnitus

We've got some strong keynote speakers on this.

 

@David,

Looking forward to seeing you all at the Expo.

love glynis

 

Update on Tinnitus Talk Staff and Volunteer Presence at the Expo

At the Expo, Tinnitus Hub (the non-profit organisation that operates Tinnitus Talk) will be represented by @Markku, @Steve, @Hazel, @glynis, and @Jazzer.

Steve and Hazel will be presenting the findings of a survey conducted through Tinnitus Talk on the social support aspects of tinnitus. See the full list of Expo talks here.

Tinnitus Talk staff will also be manning one of the stands in the Exhibitor Hall. Here we will be handing out leaflets on current and future Tinnitus Talk projects. There will also be a suggestion box to collect your input for ongoing projects. And of course you can engage with us directly.

We are still looking for additional volunteers to help out during the day mainly by representing the organisation at the Tinnitus Hub stand. If you are interested, please reply to this thread or contact us via a private message.

You will be able to recognise Tinnitus Talk staff and volunteers by these t-shirts:

 

Can't wait...

Team Tinnitus Talk / Hub here we come...

So happy.

love glynis

 

Honestly, reading the full list of talks I understand why people don’t donate as much. While important topics are being discussed, severe cases just aren’t represented. You probably won’t hear someone say in the “tinnitus and me” presentation that they’ve lost their job and are now unable to work . And while I haven’t heard the “understanding the habituation process” presentation, I’m just going to assume that it’s going to be the same thing the ATA said which is “everyone can habituate if they just want it enough”.

The profound cases can’t even attend this event. I know events like these are important but it’s frustrating because I don’t think they’ll help to make people understand how horrible tinnitus can be.

But maybe that isn’t the goal of these events and it’s more about supporting new patients with tinnitus. It sounds more like ‘let’s find a cure for tinnitus because it can be a bit annoying’.

Sorry for the negative comment. I know a lot of hard work, time and effort has been put in this event. If I could attend, I would but I can’t because of my tinnitus.

There’s no presentation on tinnitus and suicidal thoughts or tinnitus and unemployment. No one wants to scare or discourage new patients and that’s also very important but I feel like this is all happening at the expense of severe cases.

Obviously, I’m just making assumptions here and haven’t even heard any of the presentations but just reading the list of talks doesn’t make finding a cure for tinnitus sound that urgent in my opinion.

Edit: sorry guys, I’m still processing what happened to Danny...

 

Brilliantly said Haz G, and I couldn’t agree more! We should be celebrating the fact that something tinnitus related is being presented on this scale. Why must we always pick faults with everything? Remember that we all have the power to influence and change the world around us, but we must act upon it. We cannot change how the world views tinnitus by sitting inactively, on the sidelines, whilst critising the efforts of organisations who are, at least, trying to do something.

I hope it goes really well for you and Steve (and the rest of the volunteers), and thank you for helping the cause. Awesome work, BTA, and Tinnitus Hub!

 

Completely agree, like I said if I could attend I would, financially wise it's not a problem but my tinnitus isn't stable enough.

That's amazing to hear, thank you all so much!

While I think it's great that events such as this one exist to help people cope with tinnitus, I just think that those events might lead to the public not understanding how severe tinnitus can be. The public itself could also use more awareness on this. I'm simply worried that these events might do more harm than good when it comes to raising money and awareness for severe cases - but obviously, those events are a great way for people to find information and support. I'm not against those events at all but I can't deny that I feel a bit torn.

Please don't worry, I didn't read your reply as an attack at all and I hope no one felt directly targeted by my message. I'm so grateful for all the hard work you've all been doing. I struggle to do more for this cause, I donate here and there but I can't attend any events, at least currently.

 

Looking forward to meeting you all. Sounds like a real meet up! We currently have over 200 signed up to come along.

This is the first time this sort of event has been run about tinnitus ever, as far as I can tell. Will we get it all right? No. Will we be able to help everyone who attends? Probably not. Will the agenda suit everyone from those new to the condition right though to the profound cases? Tough ask.

BUT... It's got to be worth trying right? We've got to try anything that might put people on the right path to be able to live with tinnitus. If we get close to half of the people attending leaving feeling they've learned more about how to manage their tinnitus better or feel more confident about what's out there or feel less alone and isolated in living with tinnitus that's got to be worth it?

We've now got ATA, Tinnitus Hub and of course BTA all there and presenting. Which again is a first. Our information days get great feedback and we know people can get support from that format. We're hopeful this will be a different way to get up to speed with what tinnitus is, what is out there now and an update on some of the latest research.

And it's not just the talks but we're looking to create spaces for people to talk to one another and some ways to enable this, an exhibition and a range of other bits around it.

The event isn't about raising awareness of tinnitus per se, but watch this space more, we will be using the expo to try and raise awareness raising. The message isn't and won't ever be

However we do have a duty to support those new to the condition as well as those who have suicidal thoughts and lose everything because of tinnitus. It's a tough line to walk and we don't always get it right. But we try.

Also the BTA may seem a bit faceless at times but we're real people trying to do the right thing to support the tinnitus community. We take all feedback seriously, so if you do have suggestions for what else to include or how to improve the event next time... Maybe even this one if we can sort it quickly enough (although 6 weeks out Marcus is looking pretty stressed!) then get in touch.

The expo won't be perfect, I'm sure halfway through the day we'll be thinking about what would have worked better and how to improve it if we do it again.

...Already thinking we need t-shirts next time! Jealous of those, they look great!