Tinnitus Week 2021: There's Power in Numbers

[Tinnitus Talk]

It's #TinnitusWeek!

As usual, during this week, you will see the different tinnitus organizations launch their own awareness raising activities. Tinnitus Hub (the managing entity of Tinnitus Talk) will be right there, doing our part for tinnitus awareness!

Join Our Webinar!

We will be co-hosting a webinar, together with the British Tinnitus Association where you can hear four organizations talk about what they are doing to promote tinnitus research.



The webinar will take place on Thursday, February 4th at 11:30 AM (EST) / 4:30 PM (GMT).
We have only a few seats left, so this is your last chance to book a spot! A recording will be published later.

Let Your Voice Be Heard!

Tell your story below and we will share it with researchers, policymakers and the general public.
You can use video (preferred) or audio.

How?
Click play on the below video. You will hear @Hazel introduce the project, and you will have options to respond via video or audio. You can do this straight on this page.
The maximum length of a response is 5 minutes.

All you have to do is talk about:
1) How tinnitus affects you; and
2) What you expect from tinnitus research.

As for what you expect from research, try to be more specific than just "I want you to find a cure." While that is in itself an important and powerful message, the road to a cure is not necessarily clear, so what exactly do you want to see prioritized? Or how would you like to see people with tinnitus be involved in the research?



We know that it can be hard to share your stories so openly. This is why we've struggled in the past with similar projects. But if everyone expects someone else to go public, our voices will never be heard. So please take this opportunity on behalf of yourself and the community!

Let us know down below what you will be doing this week.

 

[Hazel]

I hope you will all watch our 45-second call to action above and take part. Like I said in the video, there's power in numbers, guys!

There's one more Tinnitus Week activity I want to announce here. We will be conducting yet another round of voting on the best research paper of the month of January. And we will continue this throughout all of 2021; so by the end of the year, we'll have a complete record of ALL tinnitus publications and which ones were voted "best" by the community. In this case also, there's power in numbers.

Don't be shy, let your voice be heard!

PS. We would like to thank all of our supporters, most recent ones from today being @vermillion, @Steph1710 and @gillme. As a volunteer-run organization, and with no governmental funding, we appreciate every single contribution.

If you'd like to support our work financially, you can do so below.
Alternatively, support us on Patreon.com!

​

 

[wwtsai]

I will be attending the webinar and just submitted a video of my story.

Thanks for organizing both!

 

[reggie green]

Awesome!

I hope more people will get involved.

 

[Hazel]

I will be attending the webinar and just submitted a video of my story.

Thanks for organizing both!

Awesome! Thanks for being the first to submit a video, setting a good example there

 

[Contrast]

I'd be good if the arm chair policy makers that govern tinnitus research got to hear first hand from people who suffer with tinnitus, hyperacusis, noxacusis and other hearing disorders. Like you guys implied, it seems like tinnitus research is being ignored by these sociology researchers. But since they hoard most of the grants, they control the field.

Everyone needs to make sure their voice is heard. We can change public policy.

 

[Keith Handy]

Video submitted.

 

[Jazzer]

Hi @Hazel,

I do intend making another video with the intention of highlighting the Taiwan research information.

"According to a nation wide retrospective survey, conducted in Taiwan, commenced in 2005, concluded and published on 22nd July 2020, there is a strong causative link between hearing loss - Tinnitus - Parkinson's disease and Alzheimer's disease in later life.

Our ears are a soft tissue entry point for acoustic trauma, which may lead to further neurological illnesses and general cognitive decline."​

I myself have severe tinnitus which has now progressed to Parkinson's disease.

Unfortunately my film guy cannot fit this in just now, but I do have it in mind.

Dave
Jazzer

 

[vermillion]

Hi @Hazel,
Video submitted.

 

[Lurius]

Submitted my video, hope it works for you.

 

[Jazzer]

I'm looking forward to seeing these videos guys.

Best of luck,
Dave
Jazzer

 

[vermillion]

Greetings @Hazel.

I won't be able to attend the Zoom webinar for which I booked a place, due to my awful ear pain.

I'm reporting this in case you can swap it to somebody else.

Thanks.

 

[Ed209]

I would have attended the webinar, but the time clashes with my online lessons. I hope it goes well.

 

[Hazel]

Wow, we received four videos and two audio submissions! This may not sound like that much, but it's a lot more than when we've previously tried to launch such projects

I just watched/listened to the submissions and was really moved by the heartfelt, brave and honest stories.

@Lurius, @vermillion, @Keith Handy, @wwtsai, and two others whose user name I'm not sure of, you are true winners! I hope your life will improve and your cure will come

I hope any of you who are shy or in doubt will also feel encouraged to take part.

 

[wwtsai]

@Hazel, I just wanted to thank you for representing Tinnitus Hub/Tinnitus Talk on today's webinar. I appreciate that you didn't hold back on emphasizing that the sufferers are really the ones who should be prioritized in research and treatment efforts. I also wanted to say thanks to you and @Markku for tackling all of the questions that came in that weren't otherwise addressed by the panel.

It was sad to hear that the DoD removed tinnitus from their funding priorities, but I'm hoping we can do something such as writing to our local representatives and even the President to reverse this.

 

[Mentos]

I just uploaded my story. I hope it helps.

 

[Hazel]

You can view the recording of the Tinnitus Week webinar here. Apologies for the poor quality audio from some of the speakers, we had no influence on that; @Markku did his best to fix it somewhat in editing.



In my opinion, the Q&A part was by far the most engaging. If we do something like this again maybe it should be just Q&A!

The people who took part directly in the webinar seemed to find it interesting, according to the poll we conducted at the end. But perhaps the broader audience viewing this recording might be more critical; in fact, we already received some angry comments regarding the panelists' views on FX-322. [FYI, I did not answer that question live during the webinar, although I did respond in the Q&A chat (not visible in the recording) that it seems promising.] Critical comments are of course allowed, as long as it doesn't turn into bashing for the sake of it.

@Hazel, I just wanted to thank you for representing Tinnitus Hub/Tinnitus Talk on today's webinar. I appreciate that you didn't hold back on emphasizing that the sufferers are really the ones who should be prioritized in research and treatment efforts. I also wanted to say thanks to you and @Markku for tackling all of the questions that came in that weren't otherwise addressed by the panel.

Thanks for the kind words, much appreciated!

It was sad to hear that the DoD removed tinnitus from their funding priorities, but I'm hoping we can do something such as writing to our local representatives and even the President to reverse this.

That was concerning to hear indeed! Maybe we should set up a separate thread to urge US citizens to lobby their local representatives to reverse this.

 

[Hazel]

And thank you to @Ed209 for submitting another video!!!

 

[Hazel]

The week has come to an end again. I'm happy we were able to organise the webinar, and got a good response to our call for videos.

But the fight continues guys! The video call (see first post above) will remain open, so please submit a video if you can.

Also, don't forget to cast your vote for the best research papers of January 2021.