Introducing Tinnitus Quest

[MiaVIL]

Hey @Hazel,

When is the first Q&A with Dr. Djalilian?

I found that in Germany, they are also working with implants and inner ear stimulation, but there's very little information available. That's a significant problem that I hope Tinnitus Quest can help address. The project started in 2017 with the goal of finding a solution, and while there have been some successful trials, that's all we hear. We need more transparency to stay hopeful. Maybe Tinnitus Quest could reach out to the researchers involved in this project.

Overall, I'm optimistic that implants in the inner ear or general auditory cortex stimulation will be our big hope in the coming years. Many studies (Mayo Clinic, Maastricht, Dr. Djalilian, Charité) have had positive outcomes.

(Source)

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?

 

[Markku]

When is the first Q&A with Dr. Djalilian?

Friday, August 30th, 8 am Pacific, 5 pm CET.

Once we have the registration procedure ready, we'll announce it here and put up a link! This should happen in the next few days.

 

[Tim Dziwisch]

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.

Friday, August 30th, 8 am Pacific, 5 pm CET.

Once we have the registration procedure ready, we'll announce it here and put up a link! This should happen in the next few days.

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!

 

[Hazel]

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!

Registration means we'll have a 'sign up for the Q&A' button on the Tinnitus Quest website, where you can leave your details in order to receive follow-up information about the Q&A, including the link for joining the live event. We have some work to do to figure out the process and automate it as much as possible through new webinar software for which we purchased a subscription.

As for official launch activities, indeed we will do a press release and start communicating on social media, sometime in the next two weeks. The main hold-up is that we still have not been able to activate the 'donate' feature on the website, due to some delays in getting the Tinnitus Quest bank account set up. We don't want to start driving more traffic to the website until people have the option to donate if they want, because that would be a lost opportunity

 

[MichaelBull]

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!

 

[Joeseph Stope]

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.

 

[Hazel]

We're proud to show you guys our first two videos!

This one is a general introduction to Tinnitus Quest. It summarizes in one minute what we are all about. It will probably also be the first thing we post on social media once we're ready to go with that (very soon!):



And in this video, the three researchers associated with Tinnitus Quest answer three questions: 1) What is the vision of Tinnitus Quest?; 2) Why is this so important?; and 3) What makes you confident that tinnitus can be silenced? It's a bit longer, nearly 6 minutes, but we'll probably repurpose snippets of it for Instagram and the other 'short attention span' platforms.



Of course, you can find both of the above on the Tinnitus Quest website, which we keep expanding on. I just heard that we got our bank account, which means we'll be able to set up the 'donate' feature within a week or so. Things are getting real, finally, after more than six months of preparations!

 

[marqualler]

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.

 

[lusiol]

@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!

 

[Josh59]

@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?

 

[Cmspgran]

We're proud to show you guys our first two videos!

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

 

[Hazel]

@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 concur totally with the need for more awareness. But when running a non-profit it's important to focus on the things you're good at and stay targeted in your mission. We want to be able to tell donors that we're 100% focused on finding a cure and that 80% (or whatever, we still have to determine the exact percentage) of donations go directly to research. We're also quite a small group of people doing this in our spare time, so there's only so much time and energy to go around.

I hope that makes sense... It doesn't mean in any way that raising awareness is not important, just that we don't have the capacity to focus on it.

 

[Nick47]

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!

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.

 

[ErikaS]

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!

 

[Bhaveen]

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.

 

[Hazel]

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.

We invited her to our first online event for researchers that occurred on 19 June (it was for researchers only, but we published a report about it on the website, and some videos to follow), but she declined. From having engaged with her previously, I do indeed get the sense that she's 100% focused on Auricle and doesn't want any distractions.

 

[Hazel]

As previously announced, we have now opened up registration for our first public Q&A session, featuring Dr. Hamid Djalilian. There will be similar sessions featuring Dirk de Ridder and Berthold Langguth, and we'll also have an "Ask Us Anything" session, so stay tuned

But for now, → register to take part in the Q&A with Dr. Djalilian here!

 

[MiaVIL]

As previously announced, we have now opened up registration for our first public Q&A session, featuring Dr. Hamid Djalilian. There will be similar sessions featuring Dirk de Ridder and Berthold Langguth, and we'll also have an "Ask Us Anything" session, so stay tuned

But for now, → register to take part in the Q&A with Dr. Djalilian here!

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

 

[Hazel]

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

Thanks! It's very helpful when others share our content rather than just us sharing it everywhere

 

[Nick47]

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.

 

[MiaVIL]

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.

 

[IYIiKe]

It's my understanding that questions can also be asked "live" as well.

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

 

[IYIiKe]

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?

 

[Hazel]

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?

There are no impediments to research collaboration as such, apart from people being protective of their work and worried about someone else stealing their ideas (which does actually happen occasionally). But mostly, it's about the fact that there are very few incentives for collaboration. Funding programs can specifically create those incentives. In our case, a requirement for receiving a grant from Tinnitus Quest will be openly communicating about your work and your progress on a regular basis and attending events where you can brainstorm and share ideas with other researchers.

Your second question is perhaps better suited to ask during one of our researcher Q&As, and it's not necessarily my expertise, but to give a brief answer: hearing restoration, as you point out, has yet to progress from the lab to show real promise in humans. This is not the type of research we want to fund, as we are interested in treatments that are ready to be tested in humans now. That's not to say that we're stuck with the 'same old' array of devices and implants; there are definitely new ideas out there, and we hope to get more ideas out of the woodwork - so to speak - for instance, through the Young Investigators Elevator Pitch event that we're organizing for young researchers in October to share their 'out of the box' ideas on how tinnitus could be silenced.

 

[IYIiKe]

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

 

[ColinUK]

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.

 

[Nick47]

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.

 

[Tim Dziwisch]

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.

 

[UKBloke]

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.

 

[Hazel]

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.

Thank you so much for your trust in us, Colin! We'll do our best for the community -- everyone suffering from severe tinnitus deserves better care and treatments!

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.

Thank you for your support, and for encouraging others to support Tinnitus Quest, Tim! You are right that recurring small amounts absolutely can make a difference

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.

The reason Hamid is featured in our first public Q&A is because he is part of our Executive Board. He is not, however, receiving funding from Tinnitus Quest. Our funding program is not due to open up until early 2025 (see timeline on the homepage of the website). The purpose of the Q&A is not to fundraise for his research, but merely educational and to get people engaged in Tinnitus Quest.

Tinnitus Quest aims to fund new treatment ideas, not things that have been already proven to work (where the challenges lie more in the finetuning and commercialization of the treatment). Hamid's work on electrical stimulation could not be classified as 'exploratory' and the purpose of his research is not to prove that it works; he is beyond that stage and rather focused on getting his device to market. So while I concur with your observation about 'going around in circles' in a general sense, I fail to see how it applies to Hamid's research.

Feel free to submit any questions for the Q&A to us, even if you are not able to attend. We are not afraid of critical questions, so feel free to ask them (the only reason your question might not be addressed is simply because there are too many, we already received dozens of questions in advance, but we'll do our best to address as many as possible).

P.S. Could you please link us to this research from 40 years ago? I am unaware of it.