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Can a Patient-Led Nonprofit Change Tinnitus Research Forever? — Transcript

by Tinnitus Quest · 12,979 words · 1,389 segments · language en · Watch on YouTube

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0:00The first time the three of us were together in person was in Oslo.
0:06And that's, I think, roughly two years ago.
0:10And that was really at the very early stages, right?
0:13We were kind of...
0:15Tinnitus Quest didn't even formally exist 'cause the legal entity was formed in July, 2024.
0:20So we were fantasizing, brainstorming, thinking about what could be,
0:26what could we achieve? And now we are here in Copenhagen.
0:32And Sven, how would you reflect on the past two years?
0:36Oof.
0:38It was a wild journey.
0:40I think we,
0:43you know how it always ends up, if you make a plan, nothing will
0:48work out the way you have planned it.
0:50And, I think we... but in general
0:56our main idea on how we want to create Tinnitus Quest and how we
1:01want to evolve Tinnitus Quest,
1:05I think turned out to be true.
1:07I think we were hitting the right spot for the tinnitus community.
1:15I think we really did our best to find a common ground that
1:27includes the science, the patient community, and
1:33let's say it as it is, the marketing around it.
1:37And I think we learned a lot of stuff.
1:40We tried out things, some things didn't work out the way
1:45we liked it.
1:46I think a big step for us was our grants program and creating
1:51the design of the grants program.
1:53And I think we learned so much out of the first design of the grants program
1:59that this will now keep on developing.
2:02And I think I'm, personally, I'm super proud of how this idea under
2:09the shower developed into a little, but multinational NGO to this point.
2:17Yeah, a hundred percent.
2:19Yeah
2:19You said plans never work out the way you think,
2:23right?
2:23Is there one thing that surprised you or that you didn't expect that happened?
2:31I think... I don't think it's the one thing.
2:37I think in the beginning when we were fantasizing about potential
2:44celebrities that would support us, I don't think I would've ended up
2:49saying that William Shatner would be, let's say, a part of Tinnitus Quest.
2:58I think that was a big thing.
3:00I thought we have to start, let's say, way more simple and work our way up.
3:06And I think that was one big thing. And I think it's still a tough,
3:15it's tough circumstances where you try to get people involved and it's
3:20still, as you have very often talked about it, a stigma in the industry
3:26not to talk about it.
3:29But yeah, I think that was the one big thing.
3:32And then the second was, I think I underestimated all the legal challenges
3:38also ahead of us, from starting accounting, setting up the legal entity
3:45that we decided to be in Germany.
3:47In the end, we ended up having now two entities in the US and in Germany.
3:52And this always adds up to so many things.
3:56And yeah, I think especially, you, Hazel...
3:59The admin burden is less fun.
4:01Yeah,
4:01but I don't think our audience would be very interested in me describing what
4:04that looks like. No, hopefully not.
4:07It's less fun and it takes up always more time than you think.
4:10Yeah.
4:10Yeah.
4:10Yeah.
4:11What surprised you, Jack?
4:15What surprised me is the speed that we've gone at.
4:19You mentioned that we were in Oslo two years ago, and I'm thinking, "where
4:22are we gonna be in two years time?"
4:24Because if you think about what we've achieved, a group of people, a
4:29handful of people, what we've achieved in two years, to me, in my mind, is
4:34incredible. Incredibly proud of it.
4:36It's not been easy, like you said, the admin, the work, the
4:40struggles with getting people to talk.
4:42But I think it's been an incredible journey personally to be part of this.
4:48And I think we've achieved things very, very quickly and that gives me hope for what
4:53we can achieve in the next two years.
4:55I think the dedication of the people was crazy in this project.
5:00It's not just you, Hazel, it's also Markku. Of course.
5:04And everybody who supported us and, sorry to add one thing that
5:09surprised me, I think how our
5:12board structure developed, from who were the first ones supporting us, then
5:19how new people came in, how everything shaped so quickly and then you
5:27learn that maybe the one person is not so dedicated to the mission as we thought
5:34they would be as somebody else comes up.
5:37And that is, I think, was also a very interesting development.
5:42Getting the right people is always so crucial,
5:45right?
5:45I remember, Sven, you talked at the beginning about how that's
5:49your talent as a businessman.
5:52It's always about getting the right people together.
5:55And I think you saw that at the beginning and, yeah, you have to
5:59be lucky to an extent as well.
6:00But, that worked out really well.
6:03I think we were lucky as well.
6:04Yeah.
6:04To find the right people.
6:06Yeah.
6:06I definitely think there was an element of luck in this because
6:09you just don't know, do you? Until you start working with it.
6:12Yeah, absolutely.
6:13But you can enforce luck, as I always say,
6:16always say it's possible.
6:17Exactly.
6:17And, yeah.
6:19With Markku and Hazel they already knew that they had a lot of competence in the field.
6:27Always when you start a project like that and you start talking to people,
6:32in my experience, also business wise, always something good comes up.
6:36Of course,
6:37you have to speak to a lot of people.
6:39If you don't, if you just speak to a very small amount of people, the chances
6:44that you get the right one is quite low.
6:47But if you start speaking to so many people as we did, or being on
6:52so many podcasts and platforms and whatever it was, I think turned out
6:58to be the right strategy. I think that's a hundred percent like
7:00Jack has to talk to probably 10 people before we get one video interview,
7:04right?
7:05I'm just making up the number 10
7:08but there's a lot of conversations before you get a specific output.
7:11Like I'm doing a lot of fundraising.
7:12You probably have to have 10 conversations before someone
7:15like writes you a bigger check,
7:17right?
7:17And that's a good ratio.
7:18Yeah.
7:19And that's probably a good ratio.
7:20Yeah.
7:21We get all the time people wanting to volunteer and actually most of the time
7:25put into Tinnitus Quest is volunteer time.
7:27And then it's the same thing,
7:29I talk to volunteers all the time and they're super enthusiastic, but
7:32probably one in 10 works out because people have life circumstances,
7:37other things going on, whatever,
7:38right?
7:39So it is that ratio, it's a lot of work behind the scenes to get
7:43the, get the success that you want.
7:47Anyway, let's talk a bit about the tinnitus community, because I think that's
7:54from the very beginning everything we've done has been rooted in
7:58the patient community,
8:00right?
8:00Even the very fact that Tinnitus Quest was founded by tinnitus
8:05sufferers I think is already unique.
8:09Most patient organizations aren't
8:12necessarily run by patients.
8:15I think that's already an advantage that we have.
8:17And of course, Markku and I were for years running Tinnitus Talk, so we
8:22always, like, had our ear to the ground with what patients want and heard all
8:26the frustration for years and years.
8:28And,
8:31how did you come into this, Sven?
8:32Like, for sure, you've suffered from tinnitus since age 15.
8:36You probably had your own frustrations about what was happening
8:39or not happening and probably listening to other people as well.
8:43Like, why is it so important to you
8:47that we are patient driven?
8:51Well, I think
8:53the most important thing about tinnitus and tinnitus research,
8:57as I always say, is the hope.
9:03But hope is something you can influence and it's something
9:08you can start to create.
9:11And, as most tinnitus patients around the world experience a contact to a
9:20physician, or an ENT, or whoever as an audiologist, and mostly with the answer
9:25that nothing can be done is something that is super critical to this condition.
9:32It's almost... I don't know of any condition
9:39that is so widespread around the world,
9:45considered a world health problem, where this answer is
9:48the only answer you're getting.
9:52So that is insane.
9:56So I think it was very important to create Tinnitus Quest as the light at
10:04the end of the tunnel where people can refer to, where people get the information
10:09that they want, but not being a classic patient organization like they already
10:16exist in different countries such as German Tinnitus League or
10:23even ATA and so on.
10:25And I think to focus on what matters the most in the end, the research,
10:35was the right thing to do.
10:36And I think we tried to balance that out over time.
10:40Sometimes we were more focused on research and our daily doing
10:46sometimes, creating more the patient perspective, such as the videos and
10:52all social media campaigns and so on.
10:55But yeah, in the end it has become also an NGO business
11:01operation, which is the reality.
11:04We're doing this to collect money, and to spend that money on high
11:10impact research to find a solution.
11:14And then also what was super intense and interesting is to work or not work
11:22with other organizations and see how that landscape is working
11:28and I think what we can proudly say is that Tinnitus Quest for
11:32sure reshaped that landscape a bit.
11:35I think from us starting being patients, it was key, because there's
11:42been so much, how can I put it?
11:46Disbelief.
11:47There's been so much people being scammed and there's been so much worry that a
11:53new organization might not be legitimate.
11:56Whereas we are coming from it saying that we are in this with
12:00you because we're patients.
12:02So I think that's been key.
12:03It's been key with talking to outreach, trying to get patients and
12:09trying to get people, artists, to talk.
12:12Because often they'd say, "I know you know what I'm talking about" because
12:17they know that we're tinnitus patients.
12:19So I think it's been key because it's given us legitimacy, which
12:24is, it's an ongoing battle that we still face, we know that.
12:28But for me to be able to talk to people knowing that we can relate to
12:32each other has been, yeah, a big thing for me trying to get people to talk.
12:39So something that I personally feel doesn't get spoken about much, and
12:44I'm not quite sure why, is the mental health aspect that comes with tinnitus.
12:50So we have various degrees of tinnitus, we know that. But there's also a large
12:55spectrum of people that have severe tinnitus. And that brings
13:00with it mental health issues, sleep disturbances, all that sort of stuff.
13:05So 45% of people with tinnitus experience clinical depression and anxiety.
13:1150 to 70% of tinnitus patients report sleep disturbances,
13:15and that brings a whole world of fragility and can
13:20wreck your mental health.
13:22You put on top of that, that it's an invisible condition.
13:26You put on top of that, that when you go to the doctors, they
13:28tell you to just get on with it.
13:29You put all this mental stress on yourself and no one can understand you.
13:35And I feel that the mental health aspect of severe tinnitus is something
13:39that is just not spoken about enough.
13:42And the reason why I say this is because when you do these interviews,
13:47you get these people to talk to you about how it's affected them and you put it
13:53together with what's available to them,
13:56there's a massive disconnect.
13:57There's so many things to me that don't make sense in tinnitus.
14:02This whole world does not make sense.
14:04It's just not logical in any way.
14:06So that's something that I feel is something that we brought out with
14:12Tinnitus Quest, with the interviews, sharing stories, sharing real stories.
14:17I think the mental health aspect has really been a big thing for us.
14:21I'll give you another statistic, actually.
14:25Like I said, Markku and I have been running the Tinnitus Talk support forum
14:28for many years. Markku much longer,
14:29he started in 2011.
14:32We've used it also to gather data from the community and some of that data has been
14:38turned into academic papers, et cetera.
14:40But there's a survey statistic that, I don't think we ever
14:44published it,
14:45but we ask people, "have you ever had suicidal thoughts
14:49because of your tinnitus?"
14:50And 30% answered yes.
14:52And that's a very scary statistic.
14:56Okay,
14:56now we must realize that this is not a random sample of people with tinnitus.
15:01This is a sample of people with tinnitus who are distressed enough about it to
15:04go online and seek help from others,
15:06right?
15:09Still, that is a scary statistic.
15:11And I remember even, like, back then, years ago, when I got involved and
15:17we would have conversations with other tinnitus organizations, and I
15:21won't name them because I'm gonna criticize them now a bit as well,
15:25but we would bring up statistics like this and they would say, "but
15:28we can't talk about that because we'd be scaremongering,
15:31right?
15:32We'd be making people afraid that they're gonna end
15:36up like that and they can't get better and they can't habituate."
15:39I'm like, but how can we sweep that
15:41under the rug as well, right?
15:44We should be talking about that.
15:46And there's always this tension where in the more like traditional
15:50organizations are like, "no, we're not gonna talk about that."
15:53Because to me it felt patronizing in a way. It was like,
15:58"well, we have to protect people from scary messages, so we're
16:01not gonna put out scary messages."
16:05That always frustrated me.
16:07Yeah.
16:07The problem is with that, again, the whole world
16:11of tinnitus is upside down.
16:12It's lopsided.
16:13It makes no sense to me.
16:14Because if you do that, if you keep saying, "no, don't talk about that.
16:18Don't talk about that."
16:19So what happens is that tinnitus remains classified as a minor problem
16:24because nobody's talking about suicide, nobody's talking about
16:27clinical depression, 45%, et cetera,
16:30all those figures I just mentioned. If we're not talking about it, it remains
16:34that little noise in your head that the doctor tells you to get on with.
16:37Now, of course, talking about suicide is...
16:40we've had this come up in our interviews. And when you are interviewing someone
16:45who is telling you, a young person is telling you that they have been suicidal,
16:50it affects you because, you know, it just does.
16:52How can it not?
16:54But again, as I'm hearing this and I'm interviewing this person, I'm like,
16:58"okay, this is what this person's data is."
17:00And then I go online and see what the data is regarding general
17:05tinnitus and, "oh, cope with it."
17:06And coping strategies have their role.
17:09Of course they do.
17:11We need coping strategies, right?
17:12We need to learn how to deal with it.
17:14But there's a disconnect in my mind.
17:17You've got these people severely struggling, but yet, man, we can talk
17:23about the funding and we can talk about the research of the funding,
17:26but it's like, it makes no sense to me.
17:30Yeah,
17:30but I would like to put that a little bit in perspective because it's,
17:34I wouldn't say that the research community in the past 10 years
17:41has not spoken enough about that.
17:43I think there have been great samples of studies where all co-morbidities
17:51of tinnitus have been at least looked at very much in detail.
17:56But, the reality is on the one side those studies, and on the
18:03other side, the average ENT, or the average physician you will meet
18:09as a tinnitus patient first time.
18:11So of course, those physicians, and of course we know, and that's the
18:18same thing as the sample that you just mentioned from Tinnitus Talk is.
18:23We all know those first cycles,
18:28that it's a downward spiral.
18:30When you're
18:31a first time tinnitus patient and your tinnitus comes into a chronic phase.
18:40Then, of course, there is an amount of patients that are able to adapt to that.
18:46And, of course, like probably that's the same with any chronic
18:53disease, not just tinnitus, whatever it is.
18:56Pain is the same thing.
18:57If you would ask the same questions in a pain forum and you would ask, "have you had
19:03suicidal thoughts because of your pain?"
19:06Then of course a large amount would say probably yes, depends on the
19:10amount of pain, and pain is relative
19:14as is tinnitus.
19:18So I think the problem is not the research that has been done. And
19:24I think there has been solid research on co-morbidities today.
19:29I agree.
19:29Yeah.
19:29I think everybody knows that today, at least in the top
19:33tinnitus centers around the world,
19:35and in the meantime there have been a few that if a patient
19:39has a clinical depression, we treat the depression first.
19:45If he has anxiety, we will treat the anxiety first because I think
19:51that's the normal thing to do.
19:53But, as I say, the problem is the average physician or ENT a tinnitus
20:01patient will face probably around the world as a first contact.
20:05And I think the, of course,
20:08handling those kinds of things for those physicians as such a multi-morbid
20:16condition is super difficult for them.
20:19Oh yeah.
20:20How the medical profession deals with tinnitus patients is one thing, but I think,
20:25I feel like Jack and I were talking more about the public debate around tinnitus, right?
20:29Yeah.
20:31Sorry to interrupt you.
20:31Yeah, go ahead.
20:32But I just wanna clarify that 'cause I understand what you're saying.
20:35What I was saying is that from the hackathon, we can talk
20:38about the hackathon afterwards
20:39'cause I think it's amazing.
20:40It was amazing to be there, and I want to talk about that.
20:43But what I was referring to more is that we're tinnitus patients.
20:48You add one more person who is not a tinnitus patient, they're like, "oh, is it..."
20:54like, I was at a dinner party on Friday,
20:57"so is it... what is it?
20:58Is it like a sound?"
20:59That's what I mean.
21:00It's treated as a minor problem in terms of general perception
21:05and funding and we know about that.
21:06Oh yeah. That's what I'm talking about.
21:08Because when you get these people saying these amazingly powerful things
21:14and then you go and do the research, you're like, this ain't making sense.
21:17I got a figure that I want to drop.
21:19I'm dropping figures today 'cause I did a bit of research so that I can look smart.
21:23The global cost, the annual global cost.
21:26Do you know what the global cost is?
21:28The annual global cost combined
21:31of tinnitus?
21:32Have a guess.
21:33That's a high number.
21:34It's billions.
21:35It's of course into the billions.
21:39Yeah.
21:40But it is, as I say, there's one smart thing somebody said once about
21:46tinnitus and why it's still not, even though it's a world health issue,
21:51it's one of the big world health issues next to also hearing disorders.
21:56No,
21:56so it's not just tinnitus for itself, but it's also hearing disorders and
22:02the reason is: It doesn't kill you.
22:04Yeah.
22:05Yeah.
22:05That is the simple reason.
22:07That is the simple reason.
22:08That is the simple reason.
22:10If cancer would be super painful but not killing you in the end
22:18it would've been treated differently.
22:20Yeah.
22:21But, you know, that is the reality.
22:23Yeah.
22:24And this is why it's still
22:29on such a low ball situation.
22:32I would say that's part of the explanation, but not the full one.
22:36If you think about chronic, you just mentioned chronic pain.
22:39Chronic pain doesn't kill you either.
22:40Usually people have chronic pain long after the original injury is resolved.
22:45That's what chronic pain is.
22:46It's like the centralization of the pain signal when there's actually
22:50nothing wrong physiologically, right?
22:53Yet people suffer immensely.
22:55The funding and attention that goes into that is many, many multiples if not,
23:01maybe dozen times more than tinnitus.
23:04And I think it's because everyone knows what pain is.
23:07Yeah.
23:07Everyone has once had a bad injury or an incident where they experienced
23:12extreme pain and can relate to that,
23:15right?
23:16I think that's the difference.
23:17And there is a whole field in medicine that is only looking at
23:23pain. An anesthesiologist, in the end, of course, doing anesthesia
23:33is, in the end, is taking away pain, or possible pain from you.
23:39So a whole field of medicine is only looking at pain or preventing pain.
23:47And even though it's still a complicated question in
23:52many cases, but I think the big,
23:55a big difference also is that, if you come to a doctor and you say you're
24:00having pain, he's got a variety of possibilities to treat you from the first
24:09second, he will never tell you, "yeah, sorry, just get used to your pain and
24:14go." Of course he will drive first with, I dunno, whatever it is, physiotherapy
24:19or ibuprofen or something.
24:23So pretty easy.
24:24And then, but then he's got the full scale of, up to an opiate, to
24:31shoot you to the moon, basically.
24:34And I think that is the very big difference.
24:37It's the difference how the patient perceives the situation and also
24:42what the market, that's what the reality for the pharma companies is.
24:47Yeah.
24:47And I think that's, going back to, circling back to where we
24:51started with this, the global annual cost of tinnitus is 200 billion,
24:55estimated as $200 billion per year.
24:58If you imagine that as a swimming pool, an Olympic size swimming
25:01pool, the amount of money that gets put into research every year would
25:07be a glass of water.
25:09So financially, it's a massive number.
25:13So little has been put in into funding.
25:15Again, it just doesn't make sense from a financial point of view.
25:19Yeah, I mean, it's, if we would start solving problems on this planet on the
25:26basis of that calculation, I think, we would be far more ahead
25:31in many things, yeah.
25:33But the reality is, is that in the end a problem for the market?
25:41We're talking about two things.
25:44The cost you're just, you're giving are
25:49partially costs to the economy or to the social systems or to society.
25:54Yeah.
25:55So that's always a relative cost.
25:57Something, we can say that all over again,
26:00you won't feel if it's a billion more or less in your pocket.
26:06So that's the reality. The reality is how can we motivate researchers, and then ultimately
26:14companies, to get into this field?
26:19And I think the motivation, in general, is on the one side quite low because the
26:27approach is so complex, but on the other side quite high because the patient base
26:33is huge and it's a very sustainable
26:38patient base.
26:39So what's the highest risk factor in tinnitus?
26:43It's age.
26:45So societies are getting older, so this will be a very sustainable patient base.
26:54So in the end, I think those are the big questions.
26:59And I think, to be honest, this community hasn't done a great job over the
27:09last 20, 30 years in pushing the topic.
27:15Look at other conditions, look at mental health issues.
27:19Nobody talked about mental health issues
27:2220, 30 years ago. You didn't say, "oh, my uncle has a depression."
27:26Somebody said, "he's crazy", or something like that, you know?
27:30It was very blunt, very bold.
27:33It wasn't seen as something that you talk a lot about and a couple
27:40of smart people, whoever they were,
27:42congratulations, you turned around the whole view society has on that problem.
27:52I just wanna jump in there, Sven.
27:53Sure.
27:53Because I think that, I agree with you,
27:56I agree that if we're gonna tackle this, the tinnitus community as a whole has got
28:01to internalize that it starts with them.
28:03But I also wanna put a caveat on that.
28:07I don't think the tinnitus community has had the opportunity
28:11that Tinnitus Quest is giving it.
28:13And here's what I mean.
28:16We are now getting people coming to us saying, "I want to share my story.
28:20I want to tell you everything about my life and my struggle."
28:24That's a lot for a patient to do.
28:25That takes a lot to go on camera with a guy that you've never met before.
28:29You have no relationship to this guy and say, and start crying
28:35and say, I've had people say that tinnitus has been the principal
28:39cause for breaking up their marriage.
28:42I've had people say it drove them to drink, on record.
28:47I've had people say, as we know, that they have been clinically depressed
28:51and suicidal. It takes a lot for a person to do that to a stranger.
28:55So I don't think they've had the opportunity that Tinnitus
28:58Quest is giving them.
29:00And I'm grateful that we're giving them this opportunity, but I also
29:03strongly feel that we've got to get the message across even stronger.
29:10It starts with them.
29:14We get emails all the time saying, "email that famous person.
29:18Get on the phone to that famous person."
29:21And my reaction is, I'm like, okay, hold on.
29:24Let me think about it.
29:25So let me just think about this.
29:27You wanna go and talk to this guy who's got a multimillion
29:30dollar enterprise around him.
29:33Dozens of people that rely on him or her for a living, a career
29:39that he's built up over 20, 30 years.
29:40She's built up over 20, 30 years, and you want them to come to a
29:44new organization and share their story, but you won't share yours.
29:48And people go, "what are you talking about?
29:50What have I got?
29:51They reach millions!"
29:52And my feeling on this is if we want to change things, it starts
30:00with us. Patient after patient, patient one, patient two, patient three,
30:04till we get to patient thousand.
30:06And then you go to those people and they see a whole grassroots groundswell.
30:12Jack, I do wanna hear more from you about the stories that you've heard
30:16'cause you've spoken to so many people now.
30:18Is there a specific story that affected you or is there a theme that sort of
30:25stands out from all these conversations?
30:28All of them have affected me because I'm constantly tuning into their emotion
30:33and I, yeah, they've all affected me. And I hate to say it, but the more
30:40people are honest with me, the more I'm grateful for that video because we've
30:46got to show the real face of tinnitus.
30:50I've been dealing with tinnitus for 23 years and I always thought it was just me.
30:55I always thought it was like, "is it me?
30:57Is it just my mental weakness?
31:00My anxiety or whatever?"
31:04But the more stories I hear and record the more I think,
31:09"this is a problem that is ridiculous."
31:12It's such a problem.
31:13And every video for me is a win.
31:17So in terms of stories, I've spoken to other musicians, they've told
31:21me that it's wrecked their careers, it's wrecked their mental health.
31:25It's changed the way that they've had to create.
31:28I've spoken to people, and again, this is something that, going back to the mental
31:31health aspect, people struggle more with mental health from my experience than
31:37they do with the actual sound,
31:40the actual sound itself. What does that mean?
31:42The sound is the sound.
31:45But people are struggling with going out to get a loaf of bread because they might
31:49hear a child scream, going out to a dinner party, and then if they don't go to the
31:54dinner party they shut down their life.
31:57They don't socialize, and if they don't socialize, they're not being mentally fed.
32:02All these things that we don't think about. When I go to a dinner party, I'm worried
32:06about how much noise is gonna be there.
32:08All this mental cost that it takes from people is not fully aware.
32:15When you say to someone, "I've got tinnitus" they go, "oh,
32:18is it the sound in your head?"
32:19I'm like, "yeah, it's the sound in my head
32:21But there's a whole backdrop to that I can't explain to you,
32:26because..." So how do you explain it?
32:27'Cause we just talked about how like chronic pain is different 'cause
32:31everyone knows what pain is, right?
32:32But not everyone knows the experience of living with tinnitus.
32:35So how do you convey that?
32:37That's a good question because I don't think the people who don't have tinnitus
32:43can fully grasp what we're talking about.
32:46It's inside our head. And it's not just inside our head.
32:50You're taking away everything, all the possibilities.
32:53Because just going out in a sort of a sensory world, there's noise everywhere.
33:01Me coming on the plane here, going through the airport, it's a big problem.
33:08That's why stories are so important.
33:11And that's why it goes back to what I was saying, the tinnitus
33:15community has got to internalize.
33:17We've got to make our voice count.
33:21That's the key.
33:24Yep.
33:25Let's talk a bit about the message that we are putting out versus the
33:32message that people living with tinnitus may hear through other channels.
33:37So I'll give you an example.
33:39So there's been more media attention towards tinnitus in the past few years.
33:44That's a good thing.
33:45But I notice a pattern whenever there's a media article about tinnitus, it will
33:50start with, usually they interview someone and say, "Christine lives with tinnitus and
33:56she's struggled a lot and it's affected her so much", but then it always ends with
34:02"Oh but Christine learned to live with it and now she's fine.
34:05And if you have tinnitus, you shouldn't worry too much
34:08'cause there's lots of like tools and things you can do to help
34:11yourself and you're gonna be fine."
34:13Right?
34:13So there's this compulsion to end on this positive note rather than to say,
34:18no, actually this is a urgent problem and we need to put a lot more money into
34:21research. And I always feel it's such a missed opportunity and it frustrates me.
34:27And if I will, I hate to, I don't wanna bash anyone, but I'm
34:31frustrated with the traditional tinnitus and hearing organizations.
34:35And in fact, we wouldn't have founded Tinnitus Quest if we
34:38didn't all feel that frustration,
34:39right?
34:40Because what happens when a journalist writes an article about tinnitus, they
34:43will go to one of the traditional organizations because they'll do a quick
34:46Google and they'll find one of them that have been around for dozens of years,
34:50and that's the one they'll interview.
34:52And those organizations
34:54fail to grasp the opportunity to then put out a message through this journalist that
35:00this is really urgent and we need to put a lot more money into research and we need
35:04better treatments and better solutions.
35:06And instead they'll put out this kind of wishy-washy message about, "yeah, it
35:11can be really bad but most people learn to live with it, blah, blah, blah."
35:14And that just frustrates me.
35:16Can I be honest with you?
35:17I feel if you, now I, firstly, I understand the dilemma.
35:22The dilemma is, we've got to share coping techniques, because we have to. It's a
35:27moral obligation to help people, right?
35:30We're all good people.
35:31We want to help.
35:32So we share coping techniques.
35:35But I feel, if I'm honest with you, that we've become entrenched
35:39in the idea that there's never gonna be a cure.
35:41Yeah.
35:42So they share these coping techniques and it's done with in good faith.
35:45And I appreciate that.
35:47I've benefited from them, but it's almost if we take a hundred percent
35:51of what we do, not we, Tinnitus Quest, of people that help in this area, a
35:57hundred percent, 95% would be coping techniques and then a tagline at the end,
36:03"Oh yeah,
36:04yeah, we're a little bit into research 'cause we're looking at research."
36:09Surely it should be the other way around.
36:12And I understand the dilemma 'cause they have to, but I feel that it's
36:16entrenched that there's no cure.
36:18Let's not talk about a cure because it's too complicated.
36:21Let's just pretend or... that's how I feel.
36:26Yeah.
36:26But we have to be very honest there.
36:30That was the beginning in every major disease that
36:36physicians where scientists started doing research on. That is the
36:41same today for glioblastoma, for a brain, a certain brain tumor, that
36:50everything starts at some point.
36:53And, of course this, we can talk about a cure and I'm not sure, I'm
37:03100% sure that there will be a cure, because there's a solution to that.
37:09And a very similar story is if you look at the
37:15the French researcher that got the Nobel Prize for, the shared Nobel
37:20Prize for the development of mRNA.
37:24Just read her story.
37:26She was basically dismissed from universities because her approach
37:32did not work. In the beginning,
37:34everything they tried with mRNA, people died, or people got severe side
37:40effects because they couldn't handle the immune system reacting to that.
37:45And then she kept on working on it and she found a common ground at the
37:51company today world known as BioNTech.
37:55And this is where she found a home ground to keep on with her research and
38:01in the end it turned out to be probably the sharpest sword we will
38:07have against a lot of different cancers in the next years.
38:12And I think this will turn around, or reshape the whole health
38:19landscape, what will happen there in the next years.
38:25Of course it starts somewhere and whatever the trigger point was to
38:31start, maybe it was Tinnitus Quest now.
38:34And that's what we working for.
38:36And of course, we need a little bit of luck.
38:39We always need a little bit of luck.
38:41We need,
38:44we need consistent hard work on it.
38:48It's not something where we just play around and put some bets
38:52on and, hopefully, that never wins any championship.
38:59There's a very nice saying,
39:00and I'm not into American football, but this is really true,
39:03it's actually for, the English football, the same, it's "defense wins championships."
39:10That is very good, and that means that you have to be very persistent and
39:18very strong, always working towards one point at the same time and penetrated
39:28many, many times before being able to succeed.
39:31And that's the same, it's the same in our case.
39:35You came into this from the beginnings, Sven,
39:38with this strong message of
39:40a belief in scientific progress.
39:43Scientific progress is always possible.
39:45Every problem has a solution and we just need to push hard enough to find it.
39:51And I think that has informed our narrative from the beginning where
39:55we're not afraid to talk about how bad the problem is and talk about things
39:59like mental health and suicide, but it's a positive message because we
40:03believe there's a solution as well.
40:05So we're not just sending out a scary message of, "oh, tinnitus is so bad."
40:10We're sending out a hopeful message of, "this is a very difficult and
40:13complex problem, but it can be solved and we need to all put our
40:19full attention towards solving it."
40:21Yeah, because I hate it so much that in general, in my professional life, if I
40:27have a meeting with either my team or even with third persons, then
40:37I just hate it
40:38if somebody only speaks about problems.
40:42It doesn't give me anything.
40:44It doesn't give him anything.
40:46So if you want to, you know, if you really want to change something, then put out
40:52the problem, describe the problem, but start to describe possible solutions.
40:57It doesn't matter if they're wrong or right, but just by starting to
41:01discuss solutions, this is where you will get people together.
41:06And maybe you don't have the 100% answer, but maybe you're at 40%.
41:11The next one will say, "oh, that's right.
41:13I have an idea to add to that."
41:15And this is how avalanches are developing.
41:20The beginning of an avalanche is one stone.
41:23And this, I think, this is what we are trying, not trying,
41:27but this what we are doing.
41:28A couple of things.
41:30I think we are giving hope by creating a community.
41:36Yes, we put out a stark message.
41:39We don't deal in coping techniques and stuff like that. But I think,
41:44and I don't just think it, I see it, and I've had people say, "I'm
41:47so glad that I found this page.
41:50I'm so glad I found Tinnitus Quest.
41:52I finally have a sense of hope. A realistic sense of hope."
41:56Number two, I like that we don't mix our messaging.
42:00I like that we don't mix it.
42:01I like that we're all about, "this is what we want and this is what
42:05we're trying to do to get there."
42:07And that's better treatments towards a cure.
42:11So I think these things are important.
42:14And the last thing I wanna say on this particular point is that I'm
42:17currently reading a book called "A Short History on
42:21Nearly Everything" by Bill Bryson.
42:24Every page is about a researcher, an inventor, a scientist failing.
42:32Some of these guys fail for 10, 15 years.
42:35They never actually achieved what they wanted. But then someone
42:40else would come along, take that research, and make the breakthrough.
42:44It took perseverance, determination, and passion to create this
42:49scientific world that we all live in.
42:52And I think that's where Tinnitus Quest is.
42:54We are forging through, despite all the negativity and all the problems
43:01with legitimacy, the lack of funding.
43:04And I feel if we don't do it, who else is gonna do it?
43:07That's why I feel passionate about what we're doing.
43:09Okay,
43:09so this is a hot one.
43:12We can cut there.
43:13Yeah.
43:14Yes.
43:15Why is Big Pharma hesitant to get involved consistently?
43:22It's actually not such a complicated question.
43:24It's...
43:27just from today's perspective,
43:31if you would be the CEO of a Big Pharma company and your VP
43:38called Hazel would come to you and say, "I've got a great idea.
43:42We need to get into tinnitus."
43:44You say, "tinnitus,
43:46okay."
43:46And then she will provide you with the numbers and will tell you,
43:50"800m people around the globe have tinnitus." And he says, "800 million?
43:55What are they doing the whole day?"
43:58Then she will say something like, "well, most of them cope with it and it's
44:04actually not a problem for them.
44:06And then there is an amount of, let's say, 250 million struggling with it."
44:12"Okay,
44:12250 million, still high number."
44:15And so you get on with that and then he will ask the one critical
44:22question is, "how can we approach that?"
44:27And this is where the whole story will end because Hazel will have to say, "well, at the
44:34moment there's no, there's just no..." in terms of we're talking about pharmacology,
44:44she can say something like, "Lidocaine has worked, but
44:52the side effects are so severe that people could have died."
44:57And all of that.
44:59And so, in the end, a lot of basic research has to be done.
45:04And that's something pharma is not so interested about.
45:10The basic research, at least in Europe, in the US it's a bit different,
45:15but in Europe, is done by
45:19state academic institutions, the universities, the big societies in
45:25Germany like Fran Hofer and whoever, what their name is, and you have equal ones
45:31in France and the Netherlands and so on.
45:36This is where mostly the basic research starts, and as soon as
45:40there is a hint that something could work out then most jump into it.
45:46And then the next thing that prevents, and that is one of the number one
45:51causes that pharma is taking a step at is, as soon as you would be in that
45:58conversation a bit further, you would ask, "how can we measure the success?"
46:04And then we're again at the end of the story because there is no
46:08objective measurement in tinnitus.
46:11It just doesn't exist.
46:14And you're the best example.
46:16And I'm the best example.
46:17You're saying you have a severe tinnitus.
46:20What does that mean?
46:21What, how can we, that is, if, of course, if we would develop a drug that,
46:29as the potential outcome, has only tinnitus gone, or tinnitus is still
46:34there, then of course, okay. But will a drug influence that your tinnitus gets
46:41better as long as you take the drug?
46:43Or is it just a one time pill or whatever it is?
46:47So that is a very complicated, well, no, it's an easy answer to a very
46:53complicated question is that, at the moment, the basic research
46:59is not far enough for pharmacology
47:01I think for the companies to jump on.
47:05There are companies, mostly venture capital financed, and the
47:10second thing is the measurement.
47:12It's very hard for a company to invest into a drug to come out
47:20and not have a very solid objective measurement scheme.
47:26Did it work or did not work?
47:28And that's particularly important in in tinnitus in general, because
47:34tinnitus, the, I don't know, I'm missing the word,
47:39the bias factor...
47:42the, oh God...
47:43In the study. Biomarker, no?
47:46No, not the biomarker. The placebo, sorry.
47:50The placebo effect, sorry.
47:52Missed the word.
47:53The placebo effect is so super strong, and as soon as a placebo effect is so strong
48:00in a condition, then it gets even more important that we can objectively measure
48:07the outcome of, in any trial imaginable.
48:11So this is, I think the, let's say, the easy answer to the situation.
48:17Yep.
48:18Yeah, so I totally agree.
48:20I think it's important that people understand what the research
48:26pipeline looks like for new medical solutions and innovations.
48:29And what a lot of people don't know is like Sven just described that it's
48:33usually academia actually that comes up with the major new breakthroughs and
48:37insights because the risk reward system in academia is such that you get rewarded
48:44through, you gain status in your career through making major new breakthroughs
48:52and coming up with insights that don't necessarily yet have a commercial angle,
48:57right?
48:57But in, obviously in the
49:00commercial world, there's different risk/reward systems where it's only
49:08interesting for a commercial company to pick up something if there's already, if
49:13there is already a solution of sorts that they can then develop and bring to market.
49:19So they're interested in commercializing existing solutions.
49:23But if there is no solution, if there is nothing to commercialize, then, so
49:27that's why, that's what we are trying to do with Tinnitus Quest is to accelerate
49:32that pipeline and specifically fund sort of those translational studies
49:38where you're translating insights from basic science into actual treatments.
49:43And that's where traditional funding is
49:48very slow and conservative, right?
49:51And that's why you're seeing a lot of tinnitus studies that just rehash
49:56stuff that's already been tried.
49:58Let's do another study for CBT or let's again try transcranial magnetic
50:03stimulation or whatever because that's how traditional funding for academia,
50:09that's the incentives they provide, particularly for tinnitus, because it's,
50:16there's so much we don't know yet.
50:19And so that's where we are trying to fill in that missing link.
50:23Let's fund studies in academia that really tries something new and different.
50:28And then if they identify an actual potential solution, then
50:32we need industry to pick it up.
50:34And that's also when it becomes a lot more expensive.
50:37'Cause the kind of studies we fund are actually not that expensive.
50:40There's just very little appetite from anyone to fund them.
50:44But the expensive part is usually once you make a discovery of, "hey, this
50:48treatment might actually work", then it takes hundreds of millions to get it to
50:53market, and you need industry to jump in. And it still doesn't mean it works.
50:57Yeah.
50:58This is also a very dangerous
51:03way to approach that is by, very often in science you had very
51:11small trials in the beginning that turned out to be amazing.
51:16Yeah.
51:16And then you put it in large scale,
51:18there's no guarantee. And there's no guarantee.
51:20Yeah.
51:21But this is, well, in the end, this is how science works.
51:24This will never change. Whoever debates against science around the world.
51:30I know these developments come up once in a while - we had
51:34that huge debate within Corona.
51:38I'm not going to get into that.
51:40But, in the end, if somebody gets sick for whatever reason, and on whatever
51:48condition, he always yells for the doctor and yells for a solution.
51:55And this solution is provided by science.
51:59And science works the same.
52:01The lucky situation for our generation that we live in
52:07is the acceleration through
52:12IT and, of course, AI and stuff like that.
52:17I think that will accelerate everything.
52:19I think everybody gets the feeling at the moment that, at least my feeling,
52:24that at the moment, medical research in general is accelerating at a fast pace
52:34because the opportunities have grown.
52:38Just as an example, just cancer, 20 years ago if you had cancer, there
52:43were two, well, three options: Radiation therapy, chemotherapy, surgery.
52:49Those were the three things for a long, long time.
52:53Those were the three options that were available.
52:57Sometimes worked out, sometimes it didn't, and that was it.
53:04If there was a tumor not reacting to one of those three or was not...
53:10there was no chance of surgery then it was your death sentence.
53:15So now we have way more options and I think that's the same
53:20also in hearing research.
53:21I think I have the... maybe just my Instagram algorithm got fucked up with
53:27all the hearing stuff
53:31but I see, in general, I see much more hearing research
53:37and I think we are lucky to be in a generation where all this is
53:43accelerating and I just think Tinnitus Quest is just being a part of accelerating that.
53:51Yeah.
53:51So I actually like to play devil's advocate a bit because there's
53:55a question we very often get through email and social media.
54:01And that's, "well, why can't you just help like those solutions that
54:06have already been developed?"
54:07So for instance, a lot of people ask, "why can't you help Susan
54:10Shore get her treatment to market?"
54:13Thanos Tzounopoulos, those two, by the way, are on our scientific advisory board,
54:17and we know these people very well.
54:19Hamid Djalilian is on our executive board and he's working on an electrical
54:23stimulation device for the inner ear.
54:25Why can't we just help them get these?
54:26Why are we soliciting new ideas?
54:28Why can't we just help people get these solutions to market?
54:34I can answer that.
54:35It's pretty easy.
54:39So, first of all,
54:42between those three and the status of their development is a difference.
54:52Hamid's work is still ongoing and I think Hamid is a very good
54:59example because he collected
55:04A good amount of private money to actually start this project.
55:10So he did that before Tinnitus Quest existed.
55:14And I think he has done a great job on that.
55:20So, in the end, that's an ongoing project where Tinnitus Quest didn't even
55:25exist. With Susan Shore,
55:31I think it's a different situation.
55:35At the moment they try to commercialize the product.
55:40I think it's
55:44something that has a valid perspective.
55:48But,
55:51to bring it to market, we are at the same point you just described.
55:55Yeah.
55:55We are at the point where we now need investors or a
55:59company to take a huge risk.
56:03Huge risk, but a risk, to commercialize a product like that.
56:08And now what is the reality on that market, even though those two
56:13systems have nothing in common.
56:16We saw Lenire pushing to market at hyper speed, in terms of
56:23development in tinnitus and medical devices, with hyper speed.
56:27And I don't think that the story turned out to be
56:35so successful as it sometimes appears.
56:40So people who are really into the topic see that.
56:44So they will ask
56:46the studies that are needed to bring a Susan Shore device to market be much
56:55more intense, much more detailed.
56:59And then we come to the point that I turned at the beginning, which is
57:03where is the objective measurement?
57:06Yeah?
57:06So, okay,
57:07loudness measurement.
57:08We already know that the FDA does not accept loudness reduction as one
57:14of their key performance indicators.
57:18They will still go back on the tinnitus questionnaire.
57:25This is where things get a little complicated and it's...
57:30there is no easy answer to that.
57:32But just to give you a perspective on why we are not getting into that?
57:38Because that's not our mission.
57:40That has nothing to do with our mission.
57:42Those things exist.
57:45They, or at least they're close to being realized from a scientific
57:51perspective, Tinnitus Quest is not a venture capitalist investing into new
57:58medical devices or new pharmacological approaches or whatever.
58:05This is part of the market and we can't change the market.
58:09We can only influence
58:14the beginning of those projects.
58:17And this is what we are doing at the moment.
58:18Yeah, a hundred percent.
58:19Yeah.
58:20I think all three of those are perfect examples of... they're exactly
58:24at... they're at different stages, but they're all at the stage where they
58:26need major commercial investment.
58:29And yes, it's frustrating to see that in some cases not happening or being slow.
58:35But yeah, I don't see how we... I think we need to be laser focused on our
58:39role of being like this incubator of new ideas and new solutions.
58:44Because even if all those three make it to market, it might still not work for
58:47everyone, or some of them will fail.
58:49Some of them will work for some people but not for others, et cetera.
58:54I could be, or I hope I'm wrong.
58:55Maybe one of them is like the perfect silver bullet.
58:57But I think we need to stay focused on our mission of getting new
59:01ideas to be born and new solutions.
59:05We touched on funding.
59:06Can you guys explain a little bit more about our venture capital
59:10approach to funding research?
59:14What the approach is in general, or...? It's a high risk bet.
59:19Yeah.
59:20That it is.
59:21A venture capitalist is a, mostly an investor, or can be a fund.
59:29So just a conglomerate of different investors.
59:33And basically what they do is they try to invest at, well, they invest at different
59:40early stages. But at an early stage, find an idea that is maybe so crazy
59:49that nobody else believes it works and give money to those projects.
59:55And I'm not sure what the official failure rate is, but I would say
1:00:02if those investors have a one out of 500 rate, then it's amazing.
1:00:10That is my gut feeling.
1:00:12I don't know what the official rates would be in venture capital
1:00:17of all the things they invest and develop.
1:00:21That's not just medical devices or pharmacology, it can be whatever it
1:00:26is, whatever product is developing or service, could be also service.
1:00:33But yeah, so just out of my personal experience as an entrepreneur, I have
1:00:40to look at least 200 projects to do one.
1:00:46And that's not the venture capitalist, that's...
1:00:48Right.
1:00:49So actually us selecting one project out of 29 applications during our
1:00:54first grant cycle last year, that's... we were being really strict,
1:01:00but actually maybe we were lucky
1:01:03there was even one, like, I think, viable idea there.
1:01:08I think we were, yeah.
1:01:09In the end, at some point during the process, I was
1:01:12really worried that we... me too.
1:01:14Not that I was worried that we didn't find something,
1:01:19I was worried how it would affect our
1:01:26picture of Tinnitus Quest in the whole community because... but in the
1:01:30end, I was happy that we were so strict.
1:01:33Yeah, me too.
1:01:33Yeah.
1:01:34And, I think, I never thought that the idea of creating pitches would
1:01:41turn out to be, in the end, so efficient.
1:01:44Yeah.
1:01:44Because that was... I was a bit worried how that would turn out.
1:01:49But a lot of the pitches were so interesting because on the one
1:01:55side you saw what was the application and then you went into the pitch
1:02:01and it was a whole different story.
1:02:02Yeah.
1:02:03A whole different story.
1:02:04Yeah.
1:02:06And I think that was making the process very strong.
1:02:11Yeah.
1:02:11I think if, in general, research applications would be less writing and
1:02:17more pitching, I think a lot of things would be... and that's again, where we
1:02:22took a kind of a business approach and it actually saved everyone a ton of time.
1:02:26Yeah.
1:02:26Because they didn't have to fill in long forms and stuff.
1:02:29But yeah, just for the audience to understand the process, like, we opened
1:02:33up for new grant applications and we did a lot of outreach in the research
1:02:38community to get as many as possible.
1:02:40We got 29 ideas that were submitted.
1:02:44That was a good number for the first time.
1:02:47But yeah, then we had to discard a lot of them
1:02:49'cause they were either, a lot of them were kind of like rehashing
1:02:55stuff that had already been tried or maybe they just really didn't convince
1:03:00us that this could somehow work,
1:03:02Right?
1:03:02There has to be some underlying
1:03:04hypothesis that's grounded in basic science where you
1:03:07say, yeah, that could work.
1:03:09So we had to discard a lot of them.
1:03:11But we invited six to pitch in a video meeting, like, "okay, sell us
1:03:16on your idea and we're gonna ask you tons of critical questions."
1:03:19And yeah, there were a few that looked really good on paper and
1:03:22then we needed to talk to them.
1:03:23Like they couldn't answer the most basic questions on, like,
1:03:25why this would work, or whatever.
1:03:27I'm like, "yeah, no, I don't think we wanna fund you."
1:03:30And there was a moment there where we were all a bit worried that
1:03:34none of the ideas were good enough.
1:03:36And then I felt very strongly we should only fund
1:03:42something if we feel very good about it.
1:03:44But there was a legitimate concern.
1:03:46How would it look to the community that we have to announce that
1:03:50we're not funding anything?
1:03:51I mean, that looks so bad, like people are gonna lose hope and stuff.
1:03:54So for a moment there, it seemed like we were in a real dilemma.
1:03:57But then luckily, like one of the pitches like really stood out.
1:04:01And then we had actually a follow up
1:04:04call with the researcher and one of the advisors to that project
1:04:10as well to really dig in deeper and make sure we were making the right decision.
1:04:14And that was the Oxford project that we ended up awarding.
1:04:17And if you remember that, just from a venture capitalist view, this
1:04:25project stood out because, not because they had an answer to any of the critical
1:04:31questions, but they took those questions and implemented them into the project.
1:04:41That was the interesting thing about that, you know? Where the approach was very interesting.
1:04:47Of course, it was something that stood out.
1:04:51But, actually they
1:04:55took, as you would do in a pitch
1:04:58if you're smart, then you listen to what kind of questions you're getting, and
1:05:03you're getting a feeling of what could be important and try to implement that
1:05:08into your project and follow up on them.
1:05:11So that was, in the end, I think very smart thing.
1:05:15True.
1:05:16There was a real receptiveness to, "we wanna work with you and
1:05:20improve this idea together."
1:05:22And yeah, that was, that really stood out as well.
1:05:25Did we learn anything from that grant cycle that we can apply to the next one
1:05:30and how is the next one formulated and when are we gonna start looking at that?
1:05:33Yeah.
1:05:33We've already made some decisions on how the next one
1:05:38is gonna be slightly improved.
1:05:42We're gonna, well, first of all, we're gonna offer a wider range
1:05:47in terms of grant sizes. Last year we had a $100,000 grant and a $200,000.
1:05:53We need a lot more flexibility there,
1:05:55we realized. We're hoping to also attract proposals for smaller amounts because
1:06:00there are certain things that you can try out that actually can be very cheap.
1:06:04For instance, you can do a drug repurposing study, meaning
1:06:08you use an existing drug that's already on the market.
1:06:11Maybe it's off-patent, so it's very cheap.
1:06:14It's used for a different indication, but there's some evidence that it could
1:06:17work for tinnitus... or a combination,
1:06:20could be also combination of drugs.
1:06:21So there's just, that's an example, but there's certain things that you
1:06:25can try out really kind of on the cheap.
1:06:27So we're hoping to get some good proposals in that category as well.
1:06:32We do wanna probably stimulate more pharmacological proposals
1:06:38where we did have, I think we need all, but last year it was mostly
1:06:42devices and a brain stimulation.
1:06:46Yeah, it would be good to get more variety even.
1:06:48It would be good to get even more.
1:06:50We did get a couple of proposals from
1:06:52people from other fields and actually the project that ended up winning the
1:06:57principal investigator is a Parkinson's researcher, so that's really great.
1:07:01The vast majority were names, like, they were like the usual suspects.
1:07:05Nothing against the usual suspects.
1:07:07They can all apply and come up with great ideas, but get even more
1:07:11people from other fields in there.
1:07:12Get more young researchers.
1:07:14We're gonna spend more time educating the researchers on what we want
1:07:17'cause I think that a lot of them were still playing it safe last
1:07:20year 'cause they didn't fully understand and buy into our mission.
1:07:24So yeah, those are all things we plan to do differently this year.
1:07:27And we're gonna launch it quite soon.
1:07:28I'm aiming for April.
1:07:30If we can make it happen, it might get pushed to May or so, but before
1:07:33the summer, so that earlier in the year so that we can get more projects
1:07:37going sooner rather than later.
1:07:40I think this brings us to the hackathon In Wiesbaden, because when I was there
1:07:47I was watching the room, I was filming, and I was watching the room, and I
1:07:50felt like this was real sort of progress.
1:07:56And for me, one of the main reasons why is because we were bringing people
1:08:01from, sort of, outside the field slightly, with Peter, and combining them with people
1:08:09who are pillars in the community.
1:08:11And I felt that that combination of new ideas coming together with the more,
1:08:18sort of, established ideas, that's where the sparks started to fly for me.
1:08:22So I wanna ask you, what were your impressions of Wiesbaden and what
1:08:27did you come away thinking about?
1:08:29Yeah, I had a blast in Wiesbaden, and it was one day.
1:08:35It could have been... we should have done three days, but it was our first
1:08:39time organizing something like this
1:08:41and obviously a lot of effort just goes into the practical organization of it.
1:08:46But when we got into the actual discussion,
1:08:50it was a group of like 23 people,
1:08:52we had some of the key tinnitus researchers there, but like you said,
1:08:55also researchers from other fields.
1:08:57We had some of the key research funders there and patient organizations
1:09:02and everyone said at the end and when we were having dinner and stuff,
1:09:07they all said, "I've never quite been to a research meeting like this."
1:09:13'Cause usually there isn't room for open discussion, debate, healthy disagreement.
1:09:17There were certainly disagreement, but it's really important
1:09:20to bring that to the front, like,
1:09:23okay, but what are actually the things that we disagree about?
1:09:26There was a very interesting moment for me where we did a quick poll in the room:
1:09:32How many people believe that there's one central mechanism for tinnitus?
1:09:37Meaning if you can treat, intervene, in that mechanism,
1:09:42you could solve tinnitus for everyone regardless of what has
1:09:45caused it? Versus how many people believe that there are meaningfully
1:09:49different subtypes of tinnitus that need to be treated differently?
1:09:52And the room was split pretty much 50/50.
1:09:55And so those are things you don't get in a traditional academic conference.
1:10:01I go to many of them.
1:10:02It's important for us to network there and tell
1:10:06researchers about the work we do.
1:10:08But I've kind of stopped going to the actual conference sessions
1:10:15because, A: I never learn anything new.
1:10:18B: I don't learn anything that I couldn't read in that paper
1:10:21that they're presenting, because that's usually what they're doing,
1:10:24they're presenting a result of a study in the paper. You can
1:10:27read the paper to get the same.
1:10:30It's, to me, it's not really achieving anything new.
1:10:33So that's why I loved the hackathon.
1:10:35For me, it was great.
1:10:36That was exactly the moment also that stood out for me.
1:10:40Was this, I don't think it was even a poll.
1:10:43I think, I can't remember correctly, but I think I asked the
1:10:46questions into the room.
1:10:48Because it was, there was something that interested... It was an informal poll.
1:10:52Yeah, it was.
1:10:53Yeah, it was.
1:10:55But I think what stood out was that I actually saw different groups and even
1:11:03one-on-ones in between, after, at dinner, whatever, wherever we were going
1:11:11and doing, that they started discussing
1:11:17ideas.
1:11:18They started discussing their views, even shortly before one of the researchers
1:11:24that is from France just actually had to leave early and catch a taxi.
1:11:31I think even the five minutes before he had to go, he was having
1:11:34a quite intense, almost argument about that question, actually.
1:11:42Yes.
1:11:42And I think this was, of course, a start.
1:11:48This was, we were only able to organize that to a certain level.
1:11:56This was the first time we did it, and, of course, this was maybe not
1:12:03ultra-professional in every single step of it,
1:12:06but I think everybody, and that was the big feedback,
1:12:10we didn't get one bad feedback, and everybody said, "we'll come again."
1:12:15So I think this is the most important thing.
1:12:18And I think this, no organization in the whole field
1:12:21has achieved that to that moment.
1:12:24And this brought us to how do we organize the next hackathon, or how
1:12:30do we want these hackathons to happen?
1:12:33So, in the end, we ended up with the idea that we want to switch locations
1:12:38to have it in the US one year and in Europe, swapping that around
1:12:46to offer more access to the hackathon.
1:12:52But we still want it to be a relatively
1:12:57private event in relation to the big conferences.
1:13:05We want more people from out of the field to be invited to just get more input.
1:13:16And, yeah, I think we're on a very good path to organize the next hackathon.
1:13:25I don't know, Hazel, what you can tell about that today, but,
1:13:29or if it's still too early.
1:13:32But one thing that stood out, I think, from the last hackathon that will be a
1:13:36big topic in the next hackathon, and also influencing our grant cycle or the way
1:13:42we do it, is that in the end I think we all came up with the solution that we
1:13:50need to develop key research questions that
1:13:56prevent us from making the next step.
1:13:59And I think that is a very important thing to do.
1:14:04And one of those questions will be, for example, "how can we measure tinnitus?"
1:14:09It is one of the key research questions.
1:14:12So for us, the big thing would be, in the future, to redesign our grants
1:14:20more linked specifically to those questions, whatever the question will be.
1:14:25Yeah.
1:14:27Yeah.
1:14:27And I think it's very important that we're trying to do this with other funders,
1:14:33most prominently the Rainwater Charitable Foundation, whom
1:14:37a lot of people don't know.
1:14:39And we recently did a survey amongst our community.
1:14:42No one knows them, but they've very quietly become one
1:14:45of the main research funders.
1:14:47And so it's important we align
1:14:50where we can with other funders.
1:14:53Because, for instance, the objective measure thing might not be something
1:14:56necessarily that we fund, but someone else could fund that bit while
1:15:00we continue to fund the testing of new experimental treatments,
1:15:06right?
1:15:07But it's a very important piece that needs to get funded, and so the more we
1:15:11can align the major funders to tackle all these research questions, the better.
1:15:16So yeah, I'm looking forward to the next one.
1:15:19I'm trying to find a free venue, so if anyone knows a free venue on the
1:15:23US East Coast, let me know, but yeah.
1:15:26But Boston and New York preferred.
1:15:28Yeah, exactly.
1:15:30Yeah.
1:15:30I think it's going to be wonderful when we finish editing and share
1:15:36this content that we've got.
1:15:38I think it's gonna be fantastic for people to get an insight, because
1:15:43I think for many people it might be the first real insight they get
1:15:47to the world of tinnitus research.
1:15:50And I think that the more we show them, the more involved they get,
1:15:53the more agency they have and feel more involved with the whole thing.
1:15:57So for me, it was an amazing experience to be in the room with people I've
1:16:02been reading about for a long time.
1:16:04But I also came away with the feeling that we gotta work, we gotta work.
1:16:08There's a lot, there's a lot, there's a lot of work, there's a lot we need to do.
1:16:11So we're really focused on transparency.
1:16:14Can you walk through some of the actions we've taken to be as
1:16:18transparent as we possibly can be?
1:16:21Yeah.
1:16:22So we've thought a lot about
1:16:28how we allocate funding.
1:16:29I think that is probably the key thing that people think about when
1:16:32they think about transparency.
1:16:34I mean, there's how decisions are made,
1:16:36I think we've been very transparent about how our whole grant processes work.
1:16:40So giving you, like, a behind the scenes look at how decisions are made.
1:16:45But I think funding is probably top of the list when people think about transparency.
1:16:50And so I think when we started Tinnitus Quest, we were maybe a little bit
1:16:54naive in thinking we were just gonna raise money and put it all into
1:16:58research, which is great in theory.
1:17:00It doesn't work like that when you want to run a professional organization,
1:17:04right?
1:17:04And so one thing we soon realized is that, of course an organization has all
1:17:12kinds of running costs, but also you need to spend money to fundraise, right?
1:17:19That's the tricky thing.
1:17:20So we've put a lot of effort into our social media, so you have the
1:17:24production costs of all of that.
1:17:27Even if you're running mostly on volunteer time, there's production costs.
1:17:31And the reality is you have to put money into social media ads to
1:17:35get that social media engine started.
1:17:39And even when you already have a significant amount of followers,
1:17:42you need to keep up, keep putting ad money in from time to time.
1:17:47That's just the reality of how that system works, right?
1:17:51So it's not realistic to think we can put everything into research.
1:17:55What we wanna do is be very transparent about our funding
1:17:58streams and where the money goes.
1:18:00We're gonna release soon an annual report, our first annual report
1:18:04covering 2025, and maybe also that bit of 2024 when we just got started.
1:18:10So our first roughly 18 months, let's say, and what we've also now decided,
1:18:17which I think is very important, is we have different funding streams, right?
1:18:22We have money coming in from the website.
1:18:24People donate money on the website.
1:18:26It's typically, it's 20 euros or dollars 50, a hundred, it's amounts like that.
1:18:32Those amounts really add up.
1:18:34I think in our first 18 months the total of all of that added
1:18:39up to about a hundred thousand dollars.
1:18:41So that could be a complete research grant by itself.
1:18:46And so we decided all that money donated through the website should go fully to
1:18:50research because people want to know when they make a donation on the website
1:18:56and putting their hard earned money to an organization that they know
1:19:01us a little bit, maybe they trust us, maybe they're on the fence, whatever.
1:19:06It feels good to know that money is going a hundred percent to research.
1:19:09So we have our research fund, all the donations from the website flow into the
1:19:14research fund, and then we raise funding from high net worth people, basically.
1:19:19And that's a lot of what I'm doing is having discussions with high net worth
1:19:24people and trying to get them to donate.
1:19:28And those donations are earmarked.
1:19:31So I'll give you an example.
1:19:34Last year, I lost my job at a big corporate, where I was collateral damage
1:19:42'cause they, a lot of companies are downsizing these days.
1:19:46And I realized I would like to work full-time for Tinnitus Quest.
1:19:50I went out and fundraised my own salary.
1:19:53So I went specifically to several donors and said, "look, I'm asking you to fund
1:20:00my work and value the contribution that I'm bringing to this field and this
1:20:06organization." So they know exactly where that money is going and they're funding
1:20:13the impact that they think I can have on the field and the value that I can bring,
1:20:18right?
1:20:18And other donors might say, "no, I want that money to go fully into research."
1:20:22And then it goes fully into research.
1:20:24So in the end, it's about being very transparent and open
1:20:27about where the money goes.
1:20:31But being also very realistic that it takes money to run an organization,
1:20:36and that's the reality of it. It's not realistic to think that you can
1:20:41just run a very, what I think, is a very professional organization and
1:20:46has become in a very short time,
1:20:49you can't just do that on a shoestring, I don't think.
1:20:52Yeah.
1:20:53Yeah,
1:20:53I think that setup really is essential.
1:20:57It's essential that it's transparently communicated, but also, like you
1:21:01say, if we want a professional setup representing the tinnitus community, I
1:21:06feel like it has to be that way.
1:21:08Yeah.
1:21:09It was a perfect answer, Hazel.
1:21:12I actually have nothing to add to that.
1:21:14Only,
1:21:17only saying that, there is no
1:21:20development without initial investment.
1:21:23That is just, it doesn't exist.
1:21:26And, I think, as Hazel described it, the first 18 months were
1:21:30crucial to that Tinnitus (Quest) is considered a success or a failure.
1:21:40That was the first 18 months.
1:21:43And I think we've come to the point where we can say, "okay, this first
1:21:47success was that we established Tinnitus Quest as one of the strong
1:21:53voices for tinnitus in the world."
1:21:57And now, of course, we start like, it's like developing or starting a company.
1:22:04It's the same thing.
1:22:05There's not a lot of differences to it.
1:22:11In the beginning, what you try to do is you do the work of 10 with two.
1:22:16This is what you do in the beginning because you have no
1:22:19funds, you have no money to do that.
1:22:21And then you're getting success part by part and you have to be very
1:22:26careful on how you spend your money on what and, you know how to progress.
1:22:31And then you come to the point where you have established your,
1:22:38let's say, your home ground.
1:22:40And now the question is, what are we doing next?
1:22:43And especially, this will influence us, I think, a lot over the next
1:22:4924 to 36 months is, we haven't been, at the moment, very active in Asia because
1:22:57we just didn't have the people to do it.
1:23:00So we haven't been super active in South America and so on, so forth.
1:23:05So all those questions will arise and we will try to find a solution for that
1:23:13step by step without ever forgetting that what we are there for is to collect money for
1:23:20research and actually get into that.
1:23:23But that needs a foundation.
1:23:26Yeah.
1:23:26I think it's, yeah,
1:23:28you have to invest.
1:23:29It is just like a, like you said, it's like a startup company.
1:23:32It's the same.
1:23:32You have to invest in the beginning to get things started.
1:23:36It's not... people are not gonna donate to an organization they don't know, right?
1:23:40So you have to first establish yourself as a trusted brand
1:23:43before you can get the donations.
1:23:45And I think we're now reaching the point where it's becoming easier.
1:23:49In my fundraising conversations I'm definitely noticing that it is becoming
1:23:54easier, but fundraising is never easy, and fundraising for a cause like
1:23:59tinnitus is always gonna be challenging.
1:24:03And I think the key factor for our success in the coming years is going
1:24:07to be how much money can we raise?
1:24:09And that's the reality of it.
1:24:11And I would like to get us within the next
1:24:14two, three years, to a situation where we're raising a million per year.
1:24:17I think that is a level where we can comfortably cover our costs and
1:24:25put in a lot of money to research and have a real impact in the way
1:24:30that we want to have an impact.
1:24:32And for me, that's like the key performance indicator for the next
1:24:35two, three years, is, can we get the fundraising to that level?
1:24:40And the honest answer is, I don't know yet, but I'm gonna put in
1:24:43everything I can, and that's what I'm literally doing every day.
1:24:48I just wanna make a final comment from my point of view.
1:24:51I think for me, when I hear these conversations that we're having, a
1:24:55lot of it comes back to what I feel is the central tenant, certainly is
1:25:01for my work. And that is engagement, and motivation, and enthusiasm, and
1:25:08energy from the tinnitus community.
1:25:11I said it right from the start.
1:25:12I think the first podcast that we did, I said that if 1% of the community
1:25:16that has severe tinnitus, not the total, but the severe community, was
1:25:20to donate the price of one coffee, we could already start to raise 12 million.
1:25:25So I think it comes back to the tinnitus community themselves.
1:25:29And I would like to suggest these things to anyone listening.
1:25:34And if you've listened this far to us three babbling on for an hour and a
1:25:37half, then I would think that tinnitus is probably a problem in your life.
1:25:41So if that's the case, what I would really like you to embrace is
1:25:46number one, it's starts with you.
1:25:49Make your voice count.
1:25:52Register with your tinnitus association.
1:25:54If you don't have one, start one. All you need is a Facebook page.
1:25:56Start one.
1:25:58Engage or register with us.
1:26:00Number two, understand what we're saying is that donations are the key.
1:26:06So if you can afford $5, $10, whatever you can afford.
1:26:09But whether we like it or not, if donations don't come, there's no research.
1:26:14And if there's no research, there's no progress.
1:26:17We're gonna be here for another 20, 30 years.
1:26:19It comes down to donations.
1:26:22I'd also like to encourage people to share your story.
1:26:25Your story counts as much as anyone.
1:26:28You might say, "I'm not gonna reach anyone, who's gonna be interested in my story?"
1:26:32It's stories that people are interested in.
1:26:36We've got to put a face on tinnitus.
1:26:38And number four, if Tinnitus Quest is something that you believe in,
1:26:44then stand up for what you believe.
1:26:46Help us.
1:26:47When you go on our social media and you see comments that we get
1:26:50all the time, "we're a scam."
1:26:52"We're this and we're that."
1:26:53"This is just... there's no cure,
1:26:55there's never gonna be a cure."
1:26:56If you see those comments, don't just scroll past them.
1:27:00If Tinnitus Quest is something that you resonate with and you believe and trust
1:27:06then don't just scroll past those comments.
1:27:08Reply, stand up for what you believe in, because it's about community.
1:27:14We keep saying tinnitus community, and that's what it's about.
1:27:19Because if we get more people, I don't think there's... I think there's
1:27:22no stopping us if we get the numbers.
1:27:26People might not realize how much they can actually help with simple, small
1:27:30actions like what you mentioned, like responding to comments from other
1:27:33people on our social media content.
1:27:36That's such a simple way to help out that would literally cost you
1:27:40a few minutes per week or whatever.
1:27:43And that honestly really helps out
1:27:45'cause even just responding to all the social media comments we get,
1:27:50if we all have to do it ourselves, just takes time away from other tasks
1:27:53like fundraising or running our grants program or whatever it is.
1:28:00So yeah, even with small things you can really help out if you
1:28:03can't afford to donate, there's lots of other things you can do.
1:28:06And like you said, sharing your story if you want, if you feel
1:28:09comfortable with that, we understand it's not everyone's thing, right?
1:28:12But it can really, really help.
1:28:15And if you want to be a volunteer, reach out to [email protected] and we'll have a
1:28:21conversation and see how you can help out.

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