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

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Feb 7, 2018.

    1. Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base


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      Support Our Work
      Can't make it to the expo? Or otherwise feel compelled to support what we do on Tinnitus Talk?
      We would not be able to attend research and patient conferences without our supporters. As we speak, we are printing materials for the Tinnitus Expo, to showcase our work and survey results to laymen and professionals alike, while raising awareness of the impact tinnitus can have - all of this incurs expenses.

      For the cost of a cheap meal, you can literally push our cause forward.

      Donate

      Thank you for your support!
       
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    2. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      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?
       
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    3. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I will be attending,
      Tickets booked and paid for
      Love glynis x
       
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    4. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Steve,
      Will you be going the Birmingham tinnitus exhibition in September?
      Got my tickets ;)
       
    5. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I am pretty sure that I will be going but I haven't booked anything up yet.
       
    6. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Brilliant! :):LOL::D
       
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    7. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.
       
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    8. DanLo

      DanLo Member Benefactor

      Location:
      London
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Good question
      Sadly I’ll be at a wedding for this one. @Steve so you know if there will be more in the future
       
    9. NormySan
      Wtf

      NormySan Member Benefactor

      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Loud noise exposure
      Sounds cool, hope you all have a blast! :LOL:
       
    10. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.
       
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    11. jay777

      jay777 Member

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      benzo/ headphones
      @Steve hi will there be anything related to hyperacusis at the event?
       
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    12. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I've asked the question, will feed back here when I get an answer.
       
    13. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Nothing is planned for hyperacusis, but there will be BTA staff there for anyone to discuss hyperacusis.
       
    14. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Anyone else going?
       
    15. Elfin
      Wishful

      Elfin Member Benefactor

      Tinnitus Since:
      08/2004
      Cause of Tinnitus:
      Loud concert
      Bump!

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

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Elfin,
      Brilliant and hope to meet you in person.
      love glynis
       
    17. Angeline

      Angeline Member

      Tinnitus Since:
      As long as I can remember
      Cause of Tinnitus:
      Unknown
      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
       
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    18. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      I just don't understand the concept if there is going to be no talk about research.
       
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    19. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Angeline,
      Brilliant and hope to get a chance to meet in person.

      love glynis
       
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    20. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      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...
       
    21. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      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.
       
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    22. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @David,

      Looking forward to seeing you all at the Expo.

      love glynis
       
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    23. AUTHOR
      AUTHOR
      Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base

      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:

      tinnitus-hub-talk-expo-shirt-front.jpg

      tinnitus-hub-talk-expo-shirt-back.jpg
       
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    24. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Can't wait...

      Team Tinnitus Talk / Hub here we come...

      So happy.

      love glynis
       
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    25. Autumnly
      Wishful

      Autumnly Member Benefactor

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      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...
       
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    26. Hazel
      Dreaming

      Hazel Director Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Hi Autumnly,

      While I sympathise with your frustration, I do feel the need to jump in here and set a few things straight.

      My main issue with your comments is that you're making a lot of assumptions about what will or won't be represented at the conference, whereas the truth is you couldn't possibly tell that from just scanning through the programme. For instance, assuming that the message of the habituation talk will be “everyone can habituate if they just want it enough” is really a bridge too far, in my opinion. It's possible of course, but I seriously doubt that this will be the main message; I would expect it to be much more nuanced and multi-faceted (if not, the speaker will have done a poor job indeed).

      Similarly, the talk that @Steve and I will be delivering will portray the significant proportion of people with tinnitus who, like yourself, are unable to attend social gatherings because of tinnitus. We will outline, based on survey data, the profound social effects of tinnitus and the (sometimes severe) limitations that people experience. We might also address the topic of work and tinnitus, since we have survey data on % people whose work has been significantly affected or who are even unable to work at all because of tinnitus. None of this is of course reflected in the summary of the talk, but it's all in the details.

      Now what would the purpose of that be? Remember that the target audience of the Expo is people with tinnitus. I could understand your frustration if the event was targeting healthcare professionals, academics or policymakers, who indeed could use more awareness on the profound psychological effects of tinnitus. But all the people at the Expo already have tinnitus. They are not there to hear about how horrible it is. They either already know this or they don't (because they have a mild case). The reason people visit the Expo, and this is explicitly how the event is being marketed, is to get advice and information on coping, treatments, etc.

      The one thing I do agree with you on is that it's a real pity the severe cases will not be able to attend. The best we can do on that front is to make the information available online as much as possible. But those personal connections do add a lot of value imo, and therefore I really wish you would be able to attend in person. If there's anything we can do to help make this possible, please let me know.

      Finally let me just urge everyone who subscribes to the opinion that this event is not sending the right message to get personally involved in making a difference. Tinnitus Talk can have a significant influence in setting the agenda for tinnitus related events, but this is not accomplished by merely expressing your opinion on this forum. We need more volunteers to make a meaningful difference!

      (Autumnly, please understand I'm not targeting you directly with the last message, but this is a real and recurring problem that we keep running into when trying to accomplish 'real world' projects).
       
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    27. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      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!
       
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    28. Autumnly
      Wishful

      Autumnly Member Benefactor

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      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.
       
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    29. Hazel
      Dreaming

      Hazel Director Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      You're right of course that the general public could use more awareness, but there are many other possible channels, as well as existing efforts, to achieve this. Ideas are of course welcome from anyone!

      Actually, one of the topics of the Expo talk that Markku, Steve and I are preparing is how 'significant others' can best support those with tinnitus. A great follow-up project would be to conduct some kind of outreach to educate significant others on how to provide the right support. One of the aims would be increased understanding of what it means to live with tinnitus and how profoundly it can impact one's life. But again, it all depends on the resources/time we have available to actually implement such a project.

      Thanks for the compliment and warm feelings!

      To everyone: In terms of volunteering there is a lot of work to be done behind the scenes - like writing/editing, moderating, resource development, data analysis, online campaigning, outreach to researchers/experts, and much more - that only requires access to a computer and no physical presence at any events. Just want to make that clear :)
       
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    30. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      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!
       
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