Let's Increase Tinnitus Research Funding in the US — Our Input for NIDCD's Strategic Plan

Just so you know, some people have had really had bad spikes from using Lenire, though they seem to be temporary. People with moderate tinnitus and/or hyperacusis seems to respond best from what I understand.

 

Done.

 

Great first post Stiliyan!! Thank you!

Thank you, Arcanesystem!

Love it when new members step up and help right away!

 

Done.

I tried emphasizing a bit the economic part of tinnitus and hearing loss, figures I've found are $25 billion and $100 billion annually. And that is just the US, so it is mindboggling that no countries are investing heavily into this. I mean even if you have no empathy, there is still a shitload of money to be made. Isn't that an incentive?

 

Thank you, Sevv.

​

 

​

 

A big THANK YOU to everyone for sending their responses into NIDCD.

If you haven't responded, there's still time. The deadline is March 31, 2020.

If you would like to receive updates from the NIDCD, including updates on the NIDCD Strategic Plan, please visit their public website at www.NIDCD.nih.gov and sign up to receive Email Updates on the homepage. I signed up and was also given the choice to receive notices from other agencies, like the Veterans Administration, as well.

If you have a question for NIDCD, you can email them at nidcdinfo@nidcd.nih.gov.

Thanks again, TC

 

Done!


A big and "Well Done!"

Great job, guys!....

 

That's how my tinnitus is anyway. Seems to come and go - good and bad - in days or weeks at a time. It's generally a couple of good days followed by a couple of bad, rinse, repeat, ad nauseum. I'm a big believer in bimodal therapy however. It's good for lot's of stuff. Even if it doesn't cure me or permanently lower it - at least right away, and I accept these things may take a good while to happen and you need to help them along - creating new neuroplasticity protects you from memory loss and all other manner of neurological impairment. And tinnitus is definitely a symptom of lost neuroplasticity.

As I've stated before I think the "cure" may end up being several things people need to do in order to resolve their tinnitus. This, Dr. Shore's thing, FX-322, some CBT training, etc. Having more options and combinations open makes that much more likely.

 

The Pharmas are starting to finally clue into this. So it's in the better late than never category, but at least stuff is up and coming.

 

What do you really really want?!

 

For you to fill out the form and submit it.

 

I would really like to help... but I don't know how to answer these questions? Can I just copy some of the example points?

 

The message that was conveyed earlier in the thread is that a repeat of answers isn't necessarily bad, as it speaks to the power of our coalition. I think lots of copy pasting with minor editing is fine.

 

You absolutely can just copy and paste what is provided. Open the first question by telling your story (how long you’ve had tinnitus, how it has impacted you), mention you’re from tinnitus talk, and you’re all set! Repeat answers show we are an educated and organized patient community

 

I wrote maybe 4-5 new paragraphs and copied the rest because I am not a native English speaker and don't have time to formulate a scientifical paper on my own in a foreign language (or even do all that research). So I copied most of what has already been written, but added my own story and some extra thoughts (especially considering the economical aspect).

 

That's what I have done. I submitted my answers now.

 

Deadline is tomorrow! Please take a moment to copy and paste the amazing answers provided and let the NIH know what tinnitus sufferers want and need!

 

Done!

 

Waited for the last minute. Didn't you?

Deadline to submit your answers is tomorrow!!!!

March 31, 2020!!

 

Haha, yes! I also let Dr. Rauschecker's team know about it as well and I also informed them of the BTA's grant program that has understanding animal models in humans a main point.

 

Today is your last chance to submit your answers!!!!!!!

 

Heh, that actually had me thinking of the Spice Girls.

 

Dr Whitelaw emailed me today. Unfortunately, only to say she has not heard back at this point. She said she will follow up with her contact. If I receive any info I will post it.

 

Thanks madam

 

Finally tinnitus is getting recognised as a condition which is wrecking and ruining people's lives.

Is there any increase in the amount of investments towards a cure or does it not work like that?

Sorry I'm not from the USA so I don't know how they deal with their funding or investments

 

When (if ever) can we expect a response?

 

Wow, it seems like eons ago that we sent in comments to NIDCD.

I recently emailed them to inquire about when we might see the draft of their strategic plan and be able to comment. They have responded that it will be available sometime this year but they did not have a date yet.

So we are still in a hold pattern.

Things are beginning to open up here in Florida and the CDC has dropped the recommendation for masks for people who have been vaccinated. Perhaps COVID-19 will become less of a distraction and we'll see NIDCD's draft sometime soon.

Take care,
TC

 

Received this update today from ATA. I guess COVID-19 is the reason for the 1 year delay. Look at the bright side, May is only 3 months away! -TC

"The NIDCD is in the process of developing their 2022-2027 strategic plan now. They hope to have a draft available for public comment this May. Organizations and the public will be notified when the draft plan is available."