Introducing Tinnitus Quest

I agree with you. I was hoping we could speed this process up. Maybe raise enough funds to hire a second ENT to help Dr. Djalilian get as many people implanted as possible (providing we get FDA approval to do so). Is this something Tinnitus Quest can fund? What about getting Dr. Carlson on board, too?

 

Yes, it's the same in Germany. If I understand correctly, they have developed the high-tech implant and are ready to begin testing it. I believe they have already conducted some tests. However, we need to speed up the process and increase transparency. Tinnitus Quest gives me so much hope for a better future.

What do you mean by "registration" in general? And when does the official start of Tinnitus Quest happen? I was told there will be several official activities, such as social media campaigns and possibly newspaper coverage, to attract more attention. Thanks for your answers!

 

I just want to say thank you for all the work you're doing with Tinnitus Quest. I've been staying away from tinnitus-related forums for now, but I'm subscribed to the Tinnitus Quest newsletter and looking forward to the first Q&A session with Dr. Djalilian.

I think this is such a great initiative. Wishing you all the best with this endeavor!

 

People come and go, and I wish you all the best. I completely understand your desire to distance yourself from tinnitus matters, as it may help you "put it in the background." However, it's important to remember that we are stronger together.

If we all choose to suffer in silence, those responsible for allocating research funding might assume that tinnitus isn't a significant issue.

So, when you're considering making a donation—whether it’s for cancer research, homelessness, or another cause—please keep tinnitus in mind as well.

All the best.

 

These are great! I can’t wait to share with my network. I’m excited to hear about the big donors you have already secured—that always helps speed things along with more donations.

 

@Hazel, wow, you've already built an impressive team. Well done!

While I don't have any specific skills to offer, I'd love to help in any way I can.

Perhaps a French translation of the site could be useful? Although my English is average, I understand it well and write quite well in French. This could allow me to share the site with French-speaking tinnitus communities and potentially help raise more funds.

Or I’m open to helping with anything else!

 

@Hazel, in addition to funding research into tinnitus, could there also be efforts to create awareness campaigns in multiple languages? These campaigns are crucial to raising awareness of conditions like tinnitus and hyperacusis, which both the general public and healthcare professionals often misunderstand.

Consider, for instance, the environments where patients with these conditions are treated, such as hospitals and ENT clinics. In most cases, these facilities are not adapted to meet the needs of individuals with tinnitus or hyperacusis. Hospitals and doctors' offices can often be quite noisy, which can be especially distressing for people with hyperacusis or sound-reactive tinnitus, as it exacerbates their symptoms.

This is an important issue to highlight because there is a common misconception—held by both the public and healthcare providers—that tinnitus does not worsen over time and that people can lead normal lives with it. Moreover, since these conditions are invisible, they often do not receive the attention they deserve.

In summary, for those severely affected by hyperacusis and sound-reactive tinnitus, there are very few environments that are truly suitable or accommodating.

What are your thoughts?

 

I'm really impressed by these videos. I hope this really comes off in a big way.

 

I've just thought that non-English speaking nations comprise the bulk of the tinnitus population. Opening the launch to get a worldwide audience is something to muse over.

 

Awesome videos. I am just so humbled and grateful for the Tinnitus Quest team and its mission. Almost all of us have felt minimized, neglected, and pushed to the side by “top medical professionals.” Even though we know they have no idea, it still hits deep when they don’t care enough to try to understand or empathize with such a life-changing condition. Watching these videos, I feel a wave of validation, and even tears come to my eyes because, for the first time, I feel seen and heard by people who care and are fighting to make a huge difference to END this awful condition.

I cannot wait to see and hear more in the upcoming months!

 

I just wanted to echo everyone's thoughts on what a great idea this is. It's also encouraging to know that with proper funding, things could improve.

Was Dr. Shore invited to participate? It seems like she would have a lot of valuable knowledge to share, though it's understandable if she's busy with Auricle.

 

I’ve signed up and also posted about it on Reddit.

 

It might be a good idea to get a list of questions going here, as there could be a lot of people on the call.

 

I spoke with @Hazel earlier today. If anyone has any questions for Dr. Djalilian, please feel free to post them on my profile, as I will be compiling a list so Dr. Djalilian can review them before the Q&A. It’s my understanding that questions can also be asked “live” as well.

Thanks all.

Don’t forget to → register for the Q&A webinar.

 

I'd hope so. Otherwise, it really wouldn't be a true Q&A.

 

Question:

In what ways is Tinnitus Quest leading researchers to collaborate and leverage resources? Are there barriers to how academic institutions receive grants and funding that prevent cross-collaboration, thereby hindering researchers' ability to truly leverage the expertise of the best tinnitus specialists? What are these barriers, and how can third-party organizations like Tinnitus Quest help remove them?

It seems that, annually, there are more reports on the testing of compounds intended to regrow or restore the function of parts of the inner ear. However, these studies rarely progress beyond initial phase trials. How much more likely is it that electronic devices, implants, or accessories will continue to be the primary focus for tinnitus treatment? Are there any other medical advances in different fields or advancements in imaging technology that show promise or could potentially aid in addressing tinnitus in the near future?

 

Ah, I meant my questions for the Q and A. I should have prefaced that

 

I just wanted to say a big thank you to everyone involved with Tinnitus Quest.

I really hope you succeed with this initiative. It's clear that tinnitus receives little funding, and patients are often dismissed by doctors who lack knowledge or are taken advantage of by people promising cures that don’t work.

I believe positive results are possible by bringing together top researchers and providing them with adequate funding to be more agile and efficient in their work.

Despite suffering from tinnitus, I've never donated to any institution because I never trusted that they would genuinely work towards finding a treatment. However, I will donate to Tinnitus Quest.

 

I second that.

 

I've noticed that donating to Tinnitus Quest is now possible, including monthly donations. Personally, I prefer giving a small amount each month, as it feels more manageable. When we think about it, we already pay for so many things, like Netflix, Spotify, and other subscriptions.

If everyone donated just 5-10 euros or dollars per month, it could make a significant difference. I'm also confident that they would receive larger contributions from several donors.

 

On the funding question, I've donated to Tinnitus Talk over the years and been happy to do so because I always felt @Markku & @Hazel were out there fighting our corner. Since learning a bit more about the history of direct electrical stimulation of the cochlear, however, a treatment that was shown over 40 years ago to mitigate tinnitus, I have to be honest and say I'm finding myself a bit on the fence at the moment with this funding of research question.

I mean, why do researchers need more money today to prove something that was shown to work over 40 years ago? Science is supposed to translate into something useful, not just go around in circles for decades. More to the point, though, Dr. Hamid Djalilian, who will shortly take questions on behalf of Tinnitus Quest, is engaged in exactly this kind of "exploratory" research, that again was shown to work over 40 years ago.

This has started to make me feel extremely uneasy. What is going on? Are the people researching this solution today simply unaware of the original research? (I find that hard to believe, by the way, because academics are forever citing each other.) Or is something about the original research didn't translate into a usable treatment? (I've seen nothing to support this, but I am open to correction.)

I can't participate in live Q&As, but I think it important Dr. Djalilian is questioned about these points because they are absolutely relevant to his work and, of course, ongoing funding streams.