Introducing Tinnitus Quest

[Hazel]

​

Too many people are left alone to suffer in 'silence' with their tinnitus. You all know this, of course, but the trouble is convincing the rest of the world that tinnitus is a serious problem that deserves serious attention and funding, a problem that requires more than just behavioral therapies, but a real solution. We are very excited to announce a new initiative to break through these obstacles.

But first, let's set the scene...

Background

For years, we at Tinnitus Hub have been tackling the problem of tinnitus in our own little way. By connecting you guys through Tinnitus Talk and providing a platform to share your troubles, ideas, and news. By being your voice at research conferences. By collecting data for research. By creating the Tinnitus Talk Podcast and other content to keep you updated on the latest developments.

All along, we've been acutely aware of the shortcomings of our approach, of the limitations to what we can achieve on a shoestring budget with a few volunteers. Countless times, we've been asked "can't you guys get celebrities to raise awareness?" or "can't you raise funds for research into a cure?". To our own frustration, we've had to tell them that we do not have the time, money, or manpower.

At the same time, we've observed from the sidelines the lack of coordinated effort to find a cure for tinnitus. Academia moves slowly and is often not patient centered. Traditional funding agencies play it safe by focusing on already established concepts instead of true innovations that may fail. Patient advocacy groups have not successfully conveyed the urgency and severity of the problem.

It's time for a change. It's time for a 'quiet revolution'. It's time for Tinnitus Quest.​

Tinnitus Quest is a new foundation, established in Germany as a non-profit just a few weeks ago. It was initiated by a German entrepreneur called Sven Köllmann. Frustrated with the lack of progress, he has already donated significant sums directly to tinnitus research. But Tinnitus Quest will provide a much bigger platform to bring together many patients, donors, and researchers with the simple (but not easy) aim of silencing tinnitus.

Research Approach

Tinnitus Quest's approach to research will be one of 'high risk, high gain'. Instead of building on already established concepts, we will seek to fund exploratory research trying out new concepts, and then iterating on successes and failures. We have identified three areas that are key to silencing tinnitus: 1) Fundamental research to reveal the underlying mechanisms of tinnitus; 2) Finding an objective measure of tinnitus; and 3) Testing out experimental approaches to resolve tinnitus. We've decided to focus on the third area, because this is where we feel can have the most impact.

Governance Structure

Patients will be heavily represented in Tinnitus Quest's governance bodies. Our Board has five members, three of whom (Sven, Markku, and Hazel) are patients, the other two are researchers: Dirk de Ridder and Hamid Djalilian.

We also have a Patient Board, which – together. with the Scientific Board – will provide advice and input to decision-making and ensure our research is truly patient-driven. We are still seeking additional members for the Patient Board, so do let us know if you are interested.

Public Outreach

One of the biggest problems of tinnitus research thus far has been the lack of public communication. As tinnitus sufferers, we usually only hear about a study before it starts and then years later when the results are published.

Tinnitus Quest will ask researchers whom we fund to provide frequent updates and full transparency. We are committed to communicating equally about successes and failures – because failure often provides unique new insights that could lead to a cure.

Timeline

The rest of 2024 will be mainly about fundraising – both from high-net-worth individuals and the public – so that by early 2025 we can organize a research conference and start giving out grants. But in the meantime, we will be publishing a lot of content, from interviews with artists to research Q&As and much more.

Learn More Through Our Research Q&As

Take a look at the Timeline on the homepage of Tinnitus Quest. There, you will find a number of scheduled public Q&A sessions, allowing you to engage directly with our researchers. Just click the 'Register Now' button to sign up.

What Can You Do?

Join our quest for a cure and become part of the solution. For now, all we're asking is that you visit TinnitusQuest.com and sign up for the newsletter by clicking on 'Get Latest Updates' and sign up to our social media through the icons at the top of the homepage. Over time, we hope to convince you to donate your time or money to the cause as well.

We hope you're as excited as we are about this news. Feel free to ask us any questions!

​

 

[marqualler]

This is amazing! Great work team! You have my full attention on Tinnitus Quest.

 

[UKBloke]

Hi @Hazel. This is an interesting development. Thank you for the update.

I wonder if you can expand a little more on the reason why you've decided to pursue avenue 3) Testing out experimental approaches to resolve tinnitus?

Personally, I would have focused on point 1) Fundamental research to reveal the underlying mechanisms of tinnitus. This is because I don't believe it's going to be possible to resolve tinnitus until science actually understands what tinnitus is.

 

[Hazel]

I wonder if you can expand a little more on the reason why you've decided to pursue avenue 3) Testing out experimental approaches to resolve tinnitus?

Personally, I would have focused on point 1) Fundamental research to reveal the underlying mechanisms of tinnitus. This is because I don't believe it's going to be possible to resolve tinnitus until science actually understands what tinnitus is.

Good question, and I completely agree regarding the importance of point 1. It's all a question of funding and timing though. Fundamental research takes a LONG time and a LOT of funding to make the translation to actual treatments. With less funding and wanting to make quick progress, we felt we'd have the most chance of success with point 3. This doesn't negate the importance of the other two in any way, and we will work closely with other funding providers to hopefully ensure that these areas are covered by organizations that are best placed to do so.

I hope that makes sense

 

[Utdmad89]

I take it this is only for tinnitus?

 

[UKBloke]

I hope that makes sense

Yes, that makes sense. In terms of emerging experimental approaches, I'm quite happy with where the electrical-based stuff is going, a little less so with the pharmaceuticals, so it'll be interesting to see how things pan out.

 

[Nick47]

Great work, @Hazel. I underestimated the work going on behind the scenes.

 

[MiaVIL]

@Hazel, I signed up to be on the Patient Board. I am interested and will devote a lot of time to this.

I am very happy that Dr. Djalilian is also a part of this.

 

[2049v]

This is great news.

I will seek support from the people and all the other tinnitus communities as much as I can.

I hope I can also contribute to this process and that we can achieve success together.

Here we go : )

 

[Muggumbo]

This is great. It's possible that you guys may be instrumental in a future cure or treatment. I can't wait to see what happens.

 

[J96]

@Hazel, I kindly request some research or experimental treatment on reactive tinnitus. After some polypharmacy, a few months after my acoustic trauma, I got reactive tinnitus, which was quite bad off the start. It was reactive to as little as brushing my teeth off the bat, and within a week, it became reactive to all sounds, even after being in silence 24/7 with hearing protection.

Noise makes it worse, including just trying to survive. It's so extreme that I'm afraid to drink water because if my Eustachian tubes click too loud when I swallow, I get more tones for the day.

Reactive tinnitus is incredibly debilitating, even more than catastrophic noxacusis. The worst part is that it is progressive with no treatment.

Please make reactive tinnitus a focal point. I'm sure the answer could also greatly benefit hyperacusis and maybe even visual snow syndrome.

 

[Hazel]

I take it this is only for tinnitus?

Yes. Again, it's a matter of focus and funding.

The hyperacusis angle is in our opinion well covered by Hyperacusis Research — they have almost the exact same operating model as Tinnitus Quest but then for hyperacusis. We'll be seeking to align and collaborate with them where possible.

 

[Bob3382]

This sounds like an awesome project.

 

[Hazel]

@Hazel, I signed up to be on the Patient Board. I am interested and will devote a lot of time to this.

Thank you! We will have to wait six weeks or so to give some other folks a chance to sign up as well, and then it depends on how many people we have and what they each bring to the table. But I feel there should be an opportunity for anyone who's interested to contribute in some way. We'll definitely get back to you

@2049v, thank you for wanting to help! I do think it would help a lot if someone could spend some time going into all the different online tinnitus groups across social media and promote Tinnitus Quest. If you're serious about doing this, let's have a call to discuss in more detail so we can provide you with some guidance

 

[Muggumbo]

You guys might have already thought about this, but you may want to reach out to veterans groups, too, since tinnitus is prevalent among military personnel. This may help you network and find funding or resources.

 

[Artemis2K]

I'm so proud of you guys! You're all doing incredible work.

 

[AverageJoe12]

Yes. Again, it's a matter of focus and funding.

The hyperacusis angle is in our opinion well covered by Hyperacusis Research — they have almost the exact same operating model as Tinnitus Quest but then for hyperacusis. We'll be seeking to align and collaborate with them where possible.

Fantastic, please do! The frequency with which tinnitus and hyperacusis occur together is really interesting. I have both, and if I could have one disappear, I would choose hyperacusis. It's been debilitating. Please stay connected to the folks at Mass Eye and Ear like Dr. Maison and Dan Polley as well.

 

[Calapsodis]

Countless times, we've been asked "can't you guys get celebrities to raise awareness?" or "can't you raise funds for research into a cure?". To our own frustration, we've had to tell them that we do not have the time, money, or manpower.

Let's hope that Tinnitus Quest changes this and gets its foot into the doors of everything mainstream. Awesome work, guys!

 

[Nick47]

I do think it would help a lot if someone could spend some time going into all the different online tinnitus groups across social media and promote Tinnitus Quest. If you're serious about doing this, let's have a call to discuss in more detail so we can provide you with some guidance

It's worth asking if anyone here is a member of any support groups (Facebook, TikTok, Instagram, Reddit, HealthUnlocked, etc.) and has any connection, however loose, to the admins. I left those groups because they felt like a goldfish bowl of repetitive questions, pseudoscience, and infighting. Some admins seem disinterested in the patients or tinnitus itself and appear content merely moderating their groups.

The value of building relationships with these groups is significant. There are at least a quarter of a million members across the main groups. In 2022, I researched some of them, examining their membership numbers. For instance, the Facebook group "Tinnitus Sufferers" has around 60,000 members. Other groups include Tinnitus Worldwide, Tinnitus UK, Tinnitus Support, etc. Additionally, consider those groups with tinnitus as a side effect of other disorders, such as Meniere's, AIED, Labyrinthitis, Vestibular Neuritis, etc. We can also include groups focused on fibromyalgia, CFS, MEFS, and hearing loss. Expanding this across all social media channels results in a vast potential audience. This reach was unimaginable 20 years ago.

The key question is: how can this be systematically achieved? I'm open to corrections or amendments.

1. Produce a list of all relevant patient groups for each social media channel, including membership numbers.
2. Contact the admins to build a relationship and explain our mission, the background of those involved, and our non-profit status.
3. Establish how Tinnitus Quest can be a resource to members (e.g., sign up for updates, patient voice, direct engagement with researchers, trial opportunities, etc.).
4. Discuss how to ensure the group is viewable and accessible to current and future members. This could include pinning our information to the top of the group page or alerting new members during sign-up/entry questions. The key to this contact is encouraging patients to sign up for updates.
5. Ensure permanent visibility, such as an advert, and consider offering incentives to admins based on the number of members who sign up for updates.

In summary, we need a concise strategy. The above points can be adjusted with better ideas. I attempted to involve Tinnitus UK in August 2022. I spoke with their media assistant, who seemed enthusiastic but ultimately did nothing. I suspect they had no intention of following through and moved on to their next mission for #TinnitusWeek 2023, the "Plug 'Em" campaign that we all found helpful.

 

[gameover]

Awesome to see this!

 

[Hazel]

It's worth asking if anyone here is a member of any support groups (Facebook, TikTok, Instagram, Reddit, HealthUnlocked, etc.) and has any connection, however loose, to the admins. I left those groups because they felt like a goldfish bowl of repetitive questions, pseudoscience, and infighting. Some admins seem disinterested in the patients or tinnitus itself and appear content merely moderating their groups.

The value of building relationships with these groups is significant. There are at least a quarter of a million members across the main groups. In 2022, I researched some of them, examining their membership numbers. For instance, the Facebook group "Tinnitus Sufferers" has around 60,000 members. Other groups include Tinnitus Worldwide, Tinnitus UK, Tinnitus Support, etc. Additionally, consider those groups with tinnitus as a side effect of other disorders, such as Meniere's, AIED, Labyrinthitis, Vestibular Neuritis, etc. We can also include groups focused on fibromyalgia, CFS, MEFS, and hearing loss. Expanding this across all social media channels results in a vast potential audience. This reach was unimaginable 20 years ago.

The key question is: how can this be systematically achieved? I'm open to corrections or amendments.

1. Produce a list of all relevant patient groups for each social media channel, including membership numbers.
2. Contact the admins to build a relationship and explain our mission, the background of those involved, and our non-profit status.
3. Establish how Tinnitus Quest can be a resource to members (e.g., sign up for updates, patient voice, direct engagement with researchers, trial opportunities, etc.).
4. Discuss how to ensure the group is viewable and accessible to current and future members. This could include pinning our information to the top of the group page or alerting new members during sign-up/entry questions. The key to this contact is encouraging patients to sign up for updates.
5. Ensure permanent visibility, such as an advert, and consider offering incentives to admins based on the number of members who sign up for updates.

In summary, we need a concise strategy. The above points can be adjusted with better ideas. I attempted to involve Tinnitus UK in August 2022. I spoke with their media assistant, who seemed enthusiastic but ultimately did nothing. I suspect they had no intention of following through and moved on to their next mission for #TinnitusWeek 2023, the "Plug 'Em" campaign that we all found helpful.

Excellent points, @Nick47! We've certainly been frustrated over the years by some of those groups not allowing any kind of 'promotion'. For instance, we've run surveys to collect data for academic research, no commercial aims whatsoever, and still the admins would ban us. But indeed, if someone could talk to them directly, they might be convinced to support initiatives that could really help sufferers -- it's certainly worth a try! And if it requires offering some kind of incentive we should consider that as well.

 

[Nick47]

And if it requires offering some kind of incentive we should consider that as well.

The incentive does not have to be monetary. It could be a place on the patient board, access to free meetings, local events, the right to vote, etc.

Long tremors are so worried and downtrodden. Everything they've seen is a scam or grifter—false hope. People are looking to fleece them. Building trust and credibility will be hard and frustrating; however, when approved by admins, it is much easier.

 

[J96]

It would be great if you could test Pomaglumetad on humans for tinnitus. In mice, its predecessor, Egumated, works by reducing tinnitus via residual inhibition in the IC (and also the thalamus).

→ Residual inhibition: From the putative mechanisms to potential tinnitus treatment

 

[UKBloke]

The incentive does not have to be monetary. It could be a place on the patient board, access to free meetings, local events, the right to vote, etc.

Long tremors are so worried and downtrodden. Everything they've seen is a scam or grifter—false hope. People are looking to fleece them. Building trust and credibility will be hard and frustrating; however, when approved by admins, it is much easier.

I agree. Tinnitus grifting is interminable and absolutely underlies much of the hardening of attitudes (certainly my own) toward the various initiatives that have sprung up over the years.

I also think it's a good idea that any outreach - certainly on social media - is done from the inside out by trusted partners, vetted by the board to speak on our behalf. From what I can gather at the moment, I think this is intended to be the case?

 

[Nick47]

It would be great if you could test Pomaglumetad on humans for tinnitus. In mice, its predecessor, Egumated, works by reducing tinnitus via residual inhibition in the IC (and also the thalamus).

mGluRs have definitely been implicated in tinnitus! The Galazyuk Lab is currently looking at mGluRs in the inferior colliculus as a potential therapeutic target for tinnitus.

He seems to work under the banner of NEOMED Hearing Research, which is based at Northeast Ohio Medical University and Kent State University.

 

[2049v]

@2049v, thank you for wanting to help! I do think it would help a lot if someone could spend some time going into all the different online tinnitus groups across social media and promote Tinnitus Quest. If you're serious about doing this, let's have a call to discuss in more detail so we can provide you with some guidance

Hi @Hazel, yes, I am serious about contributing. I have already started informing communities in my country about this, but people are indifferent and unwilling for some reason. People want a cure and to be freed from this disease, but they don't want to take any initiative in this regard. I believe there are people more talented than me who can promote Tinnitus Quest. I will continue to promote it in my country.

I want to contribute. I don't want to sit idly by, waiting for someone to save us, but I don't know how else I can contribute. Where can I find information about this? Thanks.

 

[IYIiKe]

Some admins seem disinterested in the patients or tinnitus itself and appear content merely moderating their groups.

Ain't that the truth?

I know the focus will be on getting treatments out there, but I would be interested if there is any possibility of research related to sleep deprivation prior to and/or after the onset of tinnitus. I have not learned from research, but I believe, based on the many interactions I have with patients, including myself, who are moderately/severely impacted by their tinnitus, experience some sort of sleep disturbance. While rightly, a lot of research has gone into understanding how the phantom sounds themselves are evoked and retained, I truly believe that there are connected brain mechanisms related to filtering and maintenance that, when stressed via sleep deprivation, make tinnitus onset and maintenance more susceptible.

 

[Nick47]

I expect a lot of interest in the Tinnitus Quest webinar next month.

If you look at upcoming events:

Based on preclinical results, this will be of several magnitudes more efficacious than Auricle.

 

[MiaVIL]

I've promoted Tinnitus Quest on Reddit already.

I expect a lot of interest in the Tinnitus Quest webinar next month.

If you look at upcoming events:

View attachment 57085

Based on preclinical results, this will be of several magnitudes more efficacious than Auricle.

Where do you see this on the Tinnitus Quest website? I subscribed for updates as well, but I can't find it anywhere, and I want to register.

 

[BlueMoon86]

I'll certainly donate because it's all I can do. I lost my job because of how bad my tinnitus is and how it has screwed me up, but my funds have always been limited. I've always found ways to contribute to things that matter to me (mostly animal-related causes up until this, to be honest, especially dogs).

I'm not ashamed to say I gave no thought to tinnitus until it affected me. Now that it has, I will contribute as much as possible for as long as I am here.