Your Feedback on Our Monthly Update from Directors

[Hazel]

Hey there, Tinnitus Talk members!

We recently started this thread to keep you posted on our work 'behind the scenes.' Some of you made nice comments in response (thanks!), but we decided to create this thread instead for any feedback or input you may have on our work. That way, our monthly updates thread stays clean and easy-to-read

So, feel free to give us your opinions on our work here!

Did you see anything in our Monthly Updates that you want to know more about? Post it here! Do you want to become directly involved in a certain project? Post it here! (Or PM us). Do you have an idea for a new project? Post it here!

We hope this will make the work of Tinnitus Hub (the managing entity of this forum) a much more interactive and truly grassroots experience.

Looking forward to hearing from you!

 

[Watasha]

THANK YOU for this type of update and THANK YOU to everyone involved. If only other organizations had this kind of transparency. This gives me great confidence in wanting to donate and encouraging others to donate on my behalf.

 

[Starthrower]

Wow @Hazel this is great and really helps us understand how you are working for us.

Great update idea!!

 

[Starthrower]

@Hazel you have a very busy May!!

I hope everyone reads the below message about what you are doing for Tinnitus Hub/Tinnitus Talk's members.
The time and effort is beyond what most paid employees have done in the tinnitus community.

Tinnitus Events/Conferences

I've been preparing for two tinnitus research events coming up soon.

In the week of 6 May, I will be in Berlin for a TIN-ACT meeting. (Read more about TIN-ACT in my blog post about the previous meeting.) I've been emailing with TIN-ACT management about my contributions, which will focus on patient outreach, i.e. how to communicate about your research to tinnitus patients. I'll be helping them to run a blog writing workshop and I will conduct (mock) interviews with the 15 PhD students – the latter will be recorded, so if they turn out to be any good, we might be able to turn it into a podcast episode! We're also gonna see if we can help TIN-ACT improve their website – if you want to take a look and give us input, feel free!

From 14-20 May I'll be in Taipei for the biggest annual tinnitus conference, organized by the Tinnitus Research Initiative. I've been reading up on all the speakers and participants, so that I can come prepared on who to talk to, who might be interesting to collaborate with, etc. Read more about the conference and give us your input here. We also spent quite a bit of time trying to find a cameraperson – not too expensive, obviously – who can follow me around at the conference while I conduct interviews with researchers on the spot. Really hoping that will work out!

 

[TimmyC]

@Hazel we are so lucky to have dedicated people like you doing great work for sufferers. Have a safe flight and a good rest when you get home! I pray for the health of your mother.

 

[Watasha]

@Hazel I love the updates and very much appreciate them. Please keep them coming. With so little information out there on the progress of research, etc., these updates very much help to see that the ball is still rolling in some way to advance the cause and provides hope, encouragement, and something to look forward to.

All the best...

 

[Manny]

Not much to say, just that all your guys' work, and the updates, are greatly appreciated.

 

[MattS]

Big thumbs up for the updates. It's amazing how much time and effort you put into all of this @Hazel & @Markku. Much appreciated.

I'm still pretty new to the board, but will be watching eagerly for the monthly updates.

 

[Daniel Lion]

Big thumbs up for the updates. It's amazing how much time and effort you put into all of this @Hazel & @Markku. Much appreciated.

I'm still pretty new to the board, but will be watching eagerly for the monthly updates.

Pretty impressive ehh?

A small donation of 25/50/100 dollars would really help. Whether it be a "university professor" or a builder or a primary school teacher. Our staff work for free, donations really help. Shame more people who use the forum can't cough up some chump change for such a great service. You are a statistician, you would understand the dynamics far better than me... What if everybody who used this resource coughed out a little cash? Would it help? Honestly as a an artist and year 1 teacher it seems like it might help... I don't know... Just a thought???

Take care MattS.

 

[MattS]

Pretty impressive ehh?

A small donation of 25/50/100 dollars would really help. Whether it be a "university professor" or a builder or a primary school teacher. Our staff work for free, donations really help. Shame more people who use the forum can't cough up some chump change for such a great service. You are a statistician, you would understand the dynamics far better than me... What if everybody who used this resource coughed out a little cash? Would it help? Honestly as a an artist and year 1 teacher it seems like it might help... I don't know... Just a thought???

Take care MattS.

From what I understand, there are like 5000 members - so, yeah, I think even $25/person (annually?) could have a really important impact. Not that all 5000 members are active... but still.

In terms of my own contributions - I'm happy to contribute, as I have full respect for everything @Hazel and @Markku and the others do. I'm actually in PMs with them about a number of potential ways to contribute, and am happy to support in any way I can.

Now you've got me brainstorming methods for fundraising. What about an annual Tinnitus Talk raffle? Winner gets a low level light laser, or something like that.

 

[Nonomat]

@Hazel & @Markku

Hi there!

I really don't want to add more on your plate as I know January was a busy month. But I like the monthly updates and wanted to know if you'll keep doing them?

 

[Hazel]

Hi there!

I really don't want to add more on your plate as I know January was a busy month. But I like the monthly updates and wanted to know if you'll keep doing them?

Hey there

Glad to hear you like these updates. I must admit it's been hard to keep them up with so much on our plate. But I will make an effort, after Tinnitus Week, with another update!

 

[Ed209]

Incredible work by an amazing group of people. It really proves that anything is achievable with the right amount of effort and discipline, and I believe that Tinnitus Talk sets a great example to all other volunteer associations/charities.

Imagine the potential possibilities if hundreds, or even thousands, got involved with this kind of advocacy work!

 

[Lucifer]

Incredible work by an amazing group of people. It really proves that anything is achievable with the right amount of effort and discipline, and I believe that Tinnitus Talk sets a great example to all other volunteer associations/charities.

Imagine the potential possibilities if hundreds, or even thousands, got involved with this kind of advocacy work!

Agree. We also need well known celebrities to raise awareness about noise exposure causing tinnitus but also hyperacusis.

If they actually warned us and stated that concerts etc may caused ringing and ear pain with continuous loud exposure which may end up being permanent.

If these warnings were stated maybe people will treat this condition seriously and not a fucking joke. That video of Carol made me so mad when she made fun of her husband for having tinnitus.

I reckon if Grimes were to raise awareness about tinnitus, Elon Musk will donate heaps of money to find a cure.

 

[Gabriel5050]

Great update. I really appreciate the transparency, as others said. Gets me dreaming of a world where we wouldn't even need this forum as tinnitus will be cured.

I can only wish the updates won't be further apart than this.

 

[Luke O'Flaherty]

I remember a while back that Tinnitus Talk was producing a 'Tinnitus Guide'. Has that been finished? Is it published?

 

[tommyd87]

Gets me dreaming of a world where we wouldn't even need this forum as tinnitus will be cured.

For me, if that happened, Tinnitus Talk would remain relevant because we would absolutely find things to still talk about like what we are doing, the sound of silence etc.

 

[weab00]

For me, if that happened, Tinnitus Talk would remain relevant because we would absolutely find things to still talk about like what we are doing, the sound of silence etc.

This forum would be a whole lot less gloomy for sure. And for the first time veterans will be able to tell new timers about treatments rather than telling them that it's a long road to acceptance. I'm very excited about the future and day dream about that day.