Episode 20: The Man Who Donated a Million Dollars to Tinnitus Research

[Tinnitus Talk]

Brian Fargo is a video game developer who has done well in business and led a good life until he developed tinnitus. He tried literally every possible available treatment, only to conclude that nothing helped.

So, he decided to become part of the solution and donate a million dollars to Dr. Hamid Djalilian's tinnitus research project. We interviewed both of them; it's a fascinating story of a collaboration born out of a dire need for better tinnitus treatments.

​

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We welcome any discussion, but please keep the following in mind when commenting:

• Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
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This episode was produced by @Markku and @Hazel, with the transcript created by @Andrea Rings and @Liz Windsor. Do you want to volunteer as well? Let us know!

We thank our Patreon supporters for making this podcast possible.

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[2noist]

Good lord, this Brian guy is something else! Talk about an inspirational story...

I was surprised to hear that Hamid's team is also working on internet-powered cognitive behavioral and sound therapies? Do we really need one more internet CBT and sound therapy?

I hope the electric stimulation is going to work for a number of us. Too bad it's still several years away from humans.

 

[UKBloke]

Many thanks once again to the team who produced this podcast episode. It's an excellent piece of work and tremendously important.

So refreshing to finally hear a clinician relegate 'the best we can hope to achieve is some form of habituation' approach to the past, and actually start talking in terms of silencing tinnitus instead. Even if Dr. Djalilian's research is four years out from human trials, his strategy is sorely needed right now.

Brian Fargo is evidently an interesting man too. Minus the gazillions of dollars, his tinnitus journey roughly mirrors mine in as much as he seems to have transitioned from being someone who 'had' tinnitus into someone who 'suffers' with it. There is a distinction. And this transition is so crucial where understanding tinnitus and ultimately solving it is concerned because having tinnitus is not the same as suffering with it.

I would say that although most tinnitus onset seems to be catastrophic (because of course it is the interruption of total silence), it tends to be very mild in the greater scheme of things, and reasonably straightforward for most people to get used to. Yet it's only people like myself, Brian and others here who've walked-the-walk with this condition over many years who can truly understand there is a different side to the potential progression of tinnitus.

So as wonderful as early-onset habituation can be (I know - I once had it!), I actually think it is the biggest obstruction to a proper cure that all tinnitus patients, both mild and catastrophic, face. It's also why I think stratification (that Christopher Cederroth talked about on the other episode of the podcast) based upon an objective tinnitus measurement is so damn important right now because it not only validates the patient's experience, it can also inform the treatment protocol.

Early onset patients may not feel the risk/reward of an invasive procedure is worth it, while others like myself may feel differently, especially if the device aims to 'silence' the tinnitus. Imagine that We're actually hearing the words, 'silence' the tinnitus.

In my view, Dr. Djalilian (and Brian Fargo for funding him), have just become two of our greatest allies.

 

[InNeedOfHelp]

Thank you @Hazel.

Great technology but light-years away. I wouldn't be a big fan of having something implanted behind the eardrum (with ETD etc). The infection risk seems high.

Thanks to Brian for his donation which actually has significant impact on projects like this. Another question for Brian could be, if there is any other potential treatment closer by, are you willing to donate again...?

For a next episode I wish we'd get Jon Pearson, CEO of Auricle, on the Tinnitus Talk Podcast. Not to talk about the study results of Susan Shore or the trial but about the commercial plan for bringing it to the market - timelines, challenges, funding, FDA, distribution channels, ENTs or Audiologists, home care or on location etc... Auricle was created three years ago so there must a clear vision available which unfortunately has not been shared with anyone yet.

 

[Hazel]

Good lord, this Brian guy is something else! Talk about an inspirational story...

LOL yeah, he's quite something!

I was surprised to hear that Hamid's team is also working on internet-powered cognitive behavioral and sound therapies? Do we really need one more internet CBT and sound therapy?

I actually don't recall that part myself, did I miss that? I think he might have said they used to be working on those kinds of therapies but shifted their focus then to something that could potentially be a real solution. But I could be wrong...

Many thanks once again to the team who produced this podcast episode. It's an excellent piece of work and tremendously important.

So refreshing to finally hear a clinician relegate 'the best we can hope to achieve is some form of habituation' approach to the past, and actually start talking in terms of silencing tinnitus instead. Even if Dr. Djalilian's research is four years out from human trials, his strategy is sorely needed right now.

Brian Fargo is evidently an interesting man too. Minus the gazillions of dollars, his tinnitus journey roughly mirrors mine in as much as he seems to have transitioned from being someone who 'had' tinnitus into someone who 'suffers' with it. There is a distinction. And this transition is so crucial where understanding tinnitus and ultimately solving it is concerned because having tinnitus is not the same as suffering with it.

I would say that although most tinnitus onset seems to be catastrophic (because of course it is the interruption of total silence), it tends to be very mild in the greater scheme of things, and reasonably straightforward for most people to get used to. Yet it's only people like myself, Brian and others here who've walked-the-walk with this condition over many years who can truly understand there is a different side to the potential progression of tinnitus.

So as wonderful as early-onset habituation can be (I know - I once had it!), I actually think it is the biggest obstruction to a proper cure that all tinnitus patients, both mild and catastrophic, face. It's also why I think stratification (that Christopher Cederroth talked about on the other episode of the podcast) based upon an objective tinnitus measurement is so damn important right now because it not only validates the patient's experience, it can also inform the treatment protocol.

Early onset patients may not feel the risk/reward of an invasive procedure is worth it, while others like myself may feel differently, especially if the device aims to 'silence' the tinnitus. Imagine that We're actually hearing the words, 'silence' the tinnitus.

In my view, Dr. Djalilian (and Brian Fargo for funding him), have just become two of our greatest allies.

Thanks for your kind words and thoughtful comments!

Great technology but light-years away. I wouldn't be a big fan of having something implanted behind the eardrum (with ETD etc). The infection risk seems high.

Thanks to Brian for his donation which actually has significant impact on projects like this. Another question for Brian could be, if there is any other potential treatment closer by, are you willing to donate again...?

I agree this is far away as of yet, and still quite experimental; not something any of us can (or should) run off to be getting anytime soon. As frustrating as it is, we need to await the results of the human clinical trials, which are still quite a few years off.

But on a positive note, what this episode does highlight is that one major donation can and does truly help research forward, and could mean the difference between a potential breakthrough or nothing.

For a next episode I wish we'd get Jon Pearson, CEO of Auricle, on the Tinnitus Talk Podcast. Not to talk about the study results of Susan Shore or the trial but about the commercial plan for bringing it to the market - timelines, challenges, funding, FDA, distribution channels, ENTs or Audiologists, home care or on location etc... Auricle was created three years ago so there must a clear vision available which unfortunately has not been shared with anyone yet.

The good news is that we're in touch with Auricle. It seems at this moment they only want to talk when the trial results are out, and for now they're not able to say when that will be. However, they did promise an appearance on the Tinnitus Talk Podcast

 

[blamingeverything]

Loved this episode and the entire podcast series to date. So well executed and really helpful to cut through some of the noise. Thanks @Hazel! I donated under my real name.

 

[Gb3]

Mayo Clinic in Minnesota is recruiting patients for a trial of electrical stimulation.

 

[Paulmanlike]

Thank you Brian Fargo on behalf of every single one of us.

 

[Leila]

Thank you very much for this incredibly informative episode. I like the idea that Dr. Djalilian and his team are actually working towards a cure instead of a crutch. Of course, some crutches already make one hell of a difference, like my WNG for example. And yet, in the end, it's noise on top of noise and while it makes my tinnitus noises more bearable it is taxing in a different way. It really would be great if in a couple of years' time Dr. Djalilian's research had reached the point where permanent relief wasn't just be something that's just another study, another million, another lightyear, ... away.

Thank you very much @Hazel and @Markku for your tireless work!

Thank you very much Brian Fargo for your amazing generosity and support of the tinnitus community!

And thank you very much Dr. Djalilian for choosing this particular specialty and all the time and effort you are putting into finding a cure to tinnitus---your work is giving hope to us tinnitus sufferers!

 

[AnthonyMcDonald]

That's great! I'm so glad he didn't squander his donation into ATA.

 

[star-affinity]

Just listened a few minutes in but reacted to 20-30 years until we can regenerate hair cells in the cochlea. What is that number based on? I hope it won't take that long...

Seems to be quite a lot of research on the topic and progress now so I'm hoping it goes faster!

One can always wish...

 

[Tom_Tom]

Just listened a few minutes in but reacted to 20-30 years until we can regenerate hair cells in the cochlea. What is that number based on? I hope it won't take that long...

Seems to be quite a lot of research on the topic and progress now so I'm hoping it goes faster!

One can always wish...

I think they are inferring that because regeneration is so far off, they are instead focusing on other interventions that might silence tinnitus rather than implying that their research is 20-30 years away (I hope at least...)

 

[Ed209]

I haven't got round to this episode yet, but I look forward to giving it a listen.

 

[ToriaM34]

Thank you Brian for your generous donation to tinnitus research and thanks to the Tinnitus Talk team who work so hard on these podcast episodes

 

[Bruce NH USA]

Thanks for such a great episode!

Brian Fargo is a really bright and successful guy (look him up on Wikipedia), so it gives me a lot of confidence in this technology that he would make such a substantial donation towards the research. He wouldn't do that if this did not hold enormous potential.

4 years is a long time, but at least it is something to hopefully look forward to, in the future.

 

[reggie green]

Mayo Clinic in Minnesota is recruiting patients for a trial of electrical stimulation.

I thought that clinical trial was already done.

 

[Gb3]

I thought that clinical trial was already done.

I contacted them like a month ago and it seemed like they were still recruiting. I wasn't able to apply because I take antidepressants.

 

[Jack Straw]

Amazing episode! Very well done!

 

[Phendran]

This was very nice to hear.

Big thanks for making this episode!

 

[SunshineSoul]

Here's what confused me; at the 34 minute mark, Dr. Hamid speaks about how they had 60% of patients get cured through his method, which could be done via a cochlear implant but he doesn't want to go through that route because there's only 300 specialists who can perform that surgery and it would be too costly for most people, hence why he wants to create a device that is less invasive and more accessible for millions of people.

Uhm - some of us are willing to sell our homes AND travel anywhere to have any surgery that could resolve this issue. Is what he is discussing at the 32-35 minute mark available for those with normal hearing? I'm confused about that.

Very thankful for Brian's donation but surprised he's not willing to throw a few bucks toward Dr. Susan Shore whose device is in its victory lap and could probably use some funding as well.

Also, Brian's account about ENT/Audiologists/doctors is the most relatable thing I have ever heard. And that a millionaire experiences the same thing we do is both comforting and frightening all the same. Within 2 minutes of walking into any ENT/audiologist's office (or even speaking to general practitioners) about tinnitus... I know they have no interest in the issue. No knowledge about this issue. And no real desire to help.

 

[star-affinity]

Also surprised that Brian says green tea made the tinnitus worse there in the beginning of the interview – if anything I think it should be the opposite. One always hears that green tea is good for you with its antioxidants etc.

Or?

 

[LostinTX]

I thought that clinical trial was already done.

I did a quick search and it seems they are recruiting currently in Minnesota Mayo Clinic.

Novel Tinnitus Implant System for the Treatment of Chronic Severe Tinnitus

https://www.mayo.edu/research/clinical-trials/cls-20463717

 

[KaleeTX]

Thank you! Encouraging to see money set aside for research.

 

[UKBloke]

Re the current Mayo trial; interesting to read the eligibility criteria. 12 years. I always wonder where they get these numbers from. Seems so random.

 

[Alan P]

I loved this episode! Brian walking the walk as a tinnitus sufferer and donating $1M with a challenge to match it is the kind of fundraising we so desperately need and appreciate. Brian, you are a saint!

I thought Dr. Djalilian was very educational in two areas. One, in explaining how hard it is to get government funding and two, the actual research that he's doing. Government is mainly interested in technology that's proven to work before they can get behind it with tax dollars.

The path for Dr. Djalilian to create a device instead of a pharmaceutical is smart. A much faster and less expensive route. The fact that he is so knowledgeable in many of the other areas of research and chose this path to 'a cure' or an off switch for us is beyond promising. They believe they can get the best results in the shortest amount of time for a lot less money in research. While 4 years feels like an eternity for sufferers, I wonder how much faster they could get results if they had more funding. We need to look at research for treatments as something that requires multiple paths, pharma, devices, etc...

We are in no shortage of education and awareness among sufferers if you are looking for it.

 

[ArthurCzerniak]

Brian, I don't know if you're going to be able to see this message or not, but sincerely, from the heart, thank you from every one of us who has tinnitus and doesn't have the funds to take medicine into a new direction or escalate research forward.

Thank you again.

 

[star-affinity]

I think they are inferring that because regeneration is so far off, they are instead focusing on other interventions that might silence tinnitus rather than implying that their research is 20-30 years away (I hope at least...)

Listening to the podcast just now again I also also interpreted it that way this time. If they would start research from scratch to fix/regenerate hair cells in the cochlea it would take maybe 20-30 years. Good thing others has been on it for quite some time.

Seeing the photo of the hair cell that Hough Ear Institute shared on their Facebook page (in February around Valentine's Day) left me in awe; it was not just a photo of a hair cell, it was a photo of a hair cell regenerated in their lab!

That their treatment has also been "licensed to pharmaceutical company Boehringer Ingelheim, which will take the drug through tests for safety and efficacy." shows of great progress in this endeavor.

Hearing Restoration Treatment Advances

And we have all the others working to solve the same problem.

Still of course very happy to see work being done for just the tinnitus aspect of ear damage. Thank you so much Brian and Hamid!

 

[addot]

Thank you Brian, for your contribution!

I know Dr. Djalilian's device is likely many years away from commercialization, and that we need proper clinical trials before we truly get our hopes up, but several things about his research make me optimistic:

• They already tested their approach in humans and found evidence that it works, at least for some patients.
• More than that, they found that it completely silenced some of their patients' tinnitus. How often do we come across treatments that are this effective?
• It shows that the brain can reorganize itself if aberrant activity in the inner ear is curtailed.

(Also, Dr. Djalilian seems like a pretty driven, science-first kind of guy. Totally subjective but I find that reassuring.)

 

[addot]

Listening to the podcast just now again I also also interpreted it that way this time. If they would start research from scratch to fix/regenerate hair cells in the cochlea it would take maybe 20-30 years. Good thing others has been on it for quite some time.

I didn't interpret it like that. I think the 20-30 year timeframe is Djalilian's way of expressing just how monumental of a task hearing restoration is. I don't think it's based on anything specific.

I think this is where the opinions of experts and tinnitus sufferers misalign. We can have faith that hearing restoration will happen sooner than later. But scientists can't work like that. They can only work with what they have, and what they have right now for hair cell restoration isn't much (it's never been been done in humans; very few studies of it being done in mammals; preliminary data from FX-322 was less than stellar, etc).

This disconnect frequently causes a lot of grief for both sides. I don't mean to undermine anyone's hopes! I think there is reason to be hopeful. But I can also understand the hesitancy from researchers.

 

[star-affinity]

I didn't interpret it like that. I think the 20-30 year timeframe is Djalilian's way of expressing just how monumental of a task hearing restoration is. I don't think it's based on anything specific.

The estimate has to be based on the work that has been done so far, otherwise I think it's a bit unfair.

But maybe it is when he says so? I don't know.

At least the below gives me hope it will not take 30 years.

Hearing Health Hour Webinar | The Present and Future of Inner Ear Hair Cell



They say "hearing restoration will happen" but that's it's a while before we get there. Maybe a decade or two. Or three.

Then we have this photo from Hough Ear Institute's Facebook page in February this year:

Happy Valentine's Day from Hough Ear Institute!

Fun fact: Cochlear hair cell groups form the shape of a heart. The hair cells in this picture are regenerated hair cells from our own lab and were featured on the cover of the prestigious journal, Molecular Therapy. (Basically, the scientific equivalent of being featured on the cover of Rolling Stone! )

Not in humans yet, but humans are more or less mammals too. That their treatment (like I mentioned before) also has been licensed to Boehringer Ingelheim "...which will take the drug through tests for safety and efficacy." means that it hopefully won't take more than a decade.

But who knows – maybe it's all just wishful thinking on my end.

Would be nice to get rid of the damn tinnitus for a start, so hope that goes even faster.