HOPE RINGS ETERNAL

Alex Brooks-Johnson and Patrick Lynch are two men with tinnitus. Believe or not, this might be the silver lining these two CEOs share, Alex at Tinnitus UK, and Patrick at the American Tinnitus Association (ATA). If you’re going to fight on behalf of milliions of sufferers of a complex and exhausting condition, it could help to know what it feels like. And in Patrick Lynch’s case, his empathy with such situations is supercharged by his now having beaten away three chilling knocks of cancer at his door.

Together on the morning of the Tinnitus UK Annual Conference, both these leaders are still walking fast across the common ground they thrilled at finding even more of during dinner the night before. If they had one, the banner they’d unfurl would contain the word unity.

But there’s a bigger word on that banner, and they are ready to carry it right into the jaws of the tinnitus demon itself: HOPE.

But hang on,.. It’s not yet a buddy movie with a happy ending: hope sounds a lot better if there’s money jangling beside it, and recently at Tinnitus UK and the ATA, neither offices have heard much of the clinking clanking sound that makes the world go round. There are a lot of barriers to transcend, and both have a lot to say – and they are saying it with zest and hope – about how to go about that mission. Read on.

Audiology Worldnews (AWN): What are the different challenges you two charity leaders face on either side of the Atlantic?

Patrick Lynch (PL): I tend to be glasses half full, so I see them more as opportunities than challenges, which helps put everything into perspective. So, it depends on which lens you’re looking at it through. If you’re looking at it as a patient, the largest challenge or opportunity is finding help, reliable information, and reliable help. If you’re a provider, your biggest challenge is finding a proper course of treatment and something that you know is going to work for your patients. And then if you’re a researcher, I think the two biggest challenges are funding and data. So for the ATA, it’s all of those combined, so there’s no shortage of opportunities.

The numbers are there. In the US, we know there’s over 50 million Americans with tinnitus. However, it’s not a disease or a cause you can see or understand unless you yourself have it. So getting everyone together on all of those opportunities, I think, is the number one challenge.

Alex Brooks-Johnson: “Collaboration with Patrick and others […] is an absolutely critical, essential thing to do if we’re going to make some change.” 
© Ben Collins

AWN: Your charities have made some moves towards collaboration in the past. Does your being here together for this conference signal the beginning of closer, more effective ties?

Patrick Lynch: “Just because bimodal stimulation doesn’t work for you doesn’t mean CBT won’t.”
Benno Photography © Ben Collins

PL: Yes, this is very intentional on our behalf from the ATA side. This is as much a public gesture about us trying to work together as it is about actually getting here and benefiting myself from being at the conference, so it’s allowing us the opportunity to reestablish some things that I think may have been attempted in the past, but also to bring some new energy and some new blood to that.

AB-J: We are 13 people in an office in Sheffield, but 13 people in Sheffield are not necessarily going to be able to have the impact that we need to have, to deliver that ambitious, bold strategy that we put together, which has been based on what people with tinnitus have been telling us they need. The only way we’re going to deliver it is by harnessing the power of the collective and succinctly putting forward our case.

Patrick and I do have remarkably similar backgrounds, and I think there’s almost a kind of once-in-a-lifetime opportunity for tinnitus here, for the two main leading global organisations in tinnitus to be led by people that aren’t academics or clinicians or researchers, to be free of the shackles of that. And I don’t mean that in a derogatory way; I just mean that to run a successful modern charity requires a sort of leadership that takes years and years to develop. Patrick and I have those skills. We understand what social impact is. We understand how to articulate the power of what our organisations do in an authentic and genuine way because we’ve got a lived experience, but also we understand how to run a commercially successful not-for-profit organisation.

AWN: Where are your organisations right now in relation to keeping funds coming in?

PL: I always start answering that question by saying you cannot give what you do not have. There’s no shortage of challenges and opportunities. There’s no shortage of people with opinions and needs and things that the ATA can do better or do more of. The only thing holding us back is funding. So the ATA was looking for a candidate with a fresh set of eyes and a fundraising background very intentionally. We’re doing very, very well right now. For example, in the US, there’s a site called Charity Navigator – https://www.charitynavigator.org/ – that objectively measures: they look at the tax returns for the charity and other factors, and they rate your charity, sort of like Rotten Tomatoes would a movie. So when I started, we were a two-out-of-four-star charity. Today we’re a four-out-of-four-star charity. That in turn is influencing more individual donors to consider giving. In addition, we’re reinvigorating our corporate giving program, as well as going after foundational and public grant opportunities that help diversify our income.

AB-J: Things are looking better. I mean, we’ve run out of cash, almost entirely. The difference between a year ago and now is we are now in control of it. And we have the foundational building blocks in place for a successful fundraising program. So, we’ve got a strategy, we’ve got a direction, people know what they’re doing, people understand what Tinnitus UK is trying to achieve, I think, a bit more now.

PL: I think if we can start positioning and empowering everyone that’s involved through gestures like this conference, but also asking people to consider what they can give to the mission, we’re going to make strides. And what do I mean by that? The eight million folks in the UK who have some version of tinnitus – imagine if each of them gave a pound a year to Tinnitus UK or to research or to something that was tinnitus related. Suddenly you’re talking about eight billion pounds a year for transformational research, for educational programming, for providers.

AWN: Getting the message across about tinnitus has proven so difficult, but you must go on trying to create awareness, right? Where does this 2025 Tinnitus UK Conference fit into that effort?

Left, Patrick Lynch, CEO of ATA; with Alex Brooks-Johnson, CEO Tinnitus UK.
Photo: Ben Collins

AB-J: I was on BBC Breakfast at the start of the year, which is an amazing kind of mainstream opportunity to get the message out about tinnitus. And they play a kind of high-pitched noise and they say, “well, if you don’t know what tinnitus is like, this is what it’s like”. Then they say “if you have tinnitus, now’s the time to go and make a cup of tea”. You’re kind of reinforcing a bit of a stigma here, guys. But also, just playing a noise, okay yeah, it sort of gives people some idea of what it’s like to hear that sound, but it’s nowhere near the experience of living constantly with no escape from it. Getting that across is difficult. But we have to get that message across, because otherwise, we’re never going to break through this.

We’ve got 1,400 members. It’s great. But there are eight million people with tinnitus in the UK. So if you look at it in percentage terms, it’s a fraction of a fraction. If we want to truly make a difference and make some change, then we have to engage a much bigger universe of people. And I think that’s where the collaboration with Patrick and others is not just a nice thing to do, it is an absolutely critical, essential thing to do if we’re going to make some change.

This a big conference for us. It’s the first face-to-face conference that we’ve done since the pandemic. And it’s a hybrid event, so people are able to join online as well, which we thought was an important addition given the UK reach of the organisation. I think the objective for us is about putting Tinnitus UK back on the map with an in-person event, building or rebuilding, re-establishing links with some of our best friends around the UK, meeting new people as well, so bringing different people in to the movement that we’re trying to create.

PL:  For me, the gesture of showing our physical presence here was a big step. Connecting with people who I’ve only met on Zoom in person and having honest, off-the-cuff conversations has been tremendously useful. And then following up with each of these relationships in the next six months for the ATA is key. We have Tinnitus Awareness Week [February 2 -9, 2026. ed.] coming up. We used to work on that together years ago and haven’t the last year or two, but we’ve already committed to working on that together again. I think turning that into a fundraising opportunity would be really interesting. In addition, the ATA is gonna be hosting a tinnitus research initiative in the US in 2027.

AB-J: Is that an exclusive (laughs)?

PL: The announcement? Oh, I can tell you that we are. It’s public that we are hosting it in 2027. The details are soon to come, I can tell you that much.

(Editor’s note: London will host the 4th World Tinnitus Congress (WTC) and the 15th International Tinnitus Seminar (ITS) from June 30 to July 2, 2027)

AWN: Obviously, many tinnitus sufferers are desperate about their situations and keen for bluer skies. Is there any concrete news that either of you can offer on treatments?

AB-J: I hear a lot, especially when we ask for money: “well, I’m not gonna give you any money because you haven’t done anything. You haven’t cured tinnitus yet.” Well, if we’d cured tinnitus, we wouldn’t be asking for money. You know, there’s a common misconception that there’s not lots going on. I think we need to get better at communicating that. There’s a ton of things going on. We’ve been approached recently by a couple of large companies…I realise I can’t really talk about them actually (laughs), but developing some quite interesting new techniques…

PL: I’ll help compliment that, Alex, by saying the answer to your question is yes, there is something objective we can share. I think the best way to sum it up is multimodal. So there is no one-size-fits-all treatment for tinnitus. Obviously, there’s no cure. But you know what? I’m a three-time cancer survivor. There’s still no cure for cancer. There’s still no cure for diabetes. But there are treatments for those things. Tinnitus is similar in that there are treatments. And just because bimodal stimulation doesn’t work for you doesn’t mean CBT won’t.

Finding the funding to fund evidence-based peer-reviewed science to pursue some of those a little bit further is going to be big. And I think the next big thing also is biomarkers. So getting to the point where we can objectively diagnose or pinpoint at least one version of tinnitus, I think will be a watershed moment that, yeah, will help us all.

AB-J: So I think there’s more hope than ever. I think we’re almost at a bit of a kind of perfect storm with a change in leadership of the organisations, but also what’s happening in the world in terms of AI, in terms of technology, some of those opportunities that we have, some of the NHS reforms that are going on in this country, and the opportunity that presents. So, I think there’s definitely hope, and that’s what annoys us so much when we hear that GPs are telling people there’s nothing that can be done. That is such a bad thing to tell anybody, but certainly somebody with tinnitus is going to make things worse, but also it’s blatantly wrong. There are so many things, so many things going on.

PL: Yeah, there is something that can be done. Our role is to share what those things are.

AB-J: Yes, which we need to get better at doing.