Tinnitus Week 2021: There's Power in Numbers

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!

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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.

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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.

 

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

Thanks for organizing both!

 

Awesome!

I hope more people will get involved.

 

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.

 

Video submitted.

 

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

 

Hi @Hazel,
Video submitted.

 

Submitted my video, hope it works for you.

 

I’m looking forward to seeing these videos guys.

Best of luck,
Dave
Jazzer

 

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.

 

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

 

@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.

 

I just uploaded my story. I hope it helps.