Thanks,
@Hazel. I was recently at the Brai3n office in Belgium, where Dr. De Ridder works, among others. One of the board members mentioned that they would need €10 million to create a device like Lenire, but of course, a better one. A few hundred thousand wouldn't be enough—we really need to emphasize millions. Let's make it happen!
It's important to distinguish between two aspects when it comes to cost:
- The cost of 'discovering' a new experimental approach that may silence tinnitus;
- The cost of bringing such a discovery to the market.
Tinnitus Quest is focusing on #1, where a few million or even less can go a long way and allows you to try out various experimental approaches in proof of concept studies.
Once we find something, #2 will kick in, and this is where it becomes really expensive. To bring a new discovery to market, there are many steps involved, including: a sequence of clinical trials to prove safety and efficacy, designing all the ins and outs of the device (or formula, if we're talking about a drug), designing and refining a protocol of how the treatment should be applied, training physicians, not to mention the actual production of the device/drug and figuring out how to do that at scale. Then there's things like pricing, marketing, distribution, you name it. The cost of bringing a new drug to market is, on average, more than several $100M; I think devices are cheaper, but still in that range.
So, if -- as we hope -- we discover a promising new approach with Tinnitus Quest, then we'll need significant investment from venture capital or industry to cover the costs of #2. But the good news is that the discovery phase itself should not cost too much.
All that said, yes, of course, we absolutely should go for many millions!
The higher the chance that we'll discover something valuable because we'll be able to put our eggs in many baskets.
After frequently reading about wealthy and well-known individuals, particularly those featured in videos, I had the impression that raising several million would be within reach. I also thought that involving musicians who suffer from tinnitus might help expand our reach. It's disheartening that no celebrities are involved. I sincerely hope that we can raise several million by next year when things begin. It's hard to believe that the social media accounts have gained so little traction, especially when we see how many people are active on Tinnitus Talk—not to mention all those in other tinnitus groups.
First of all, thank you for your continued support and optimism. Let me address your two points in turn:
Regarding the fundraising and celebrities, I fear I may have been a bit pessimistic previously. It's just that over the past decade or so, we have so many times heard people say, "can't we just ask celebrity X to champion our cause?" but there was never anyone who was able to reach such a celebrity and it was always disappointing to see that despite many celebrities having tinnitus, none of them would take it up as a cause. We would hear from people within the entertainment industry (music mainly, but also other creative professions) that many have tinnitus and complain about it behind the scenes but are afraid to talk about it publicly for fear of harming their careers. There seemed to be at best a 'non-sexy cause' label and at worst a real stigma on people speaking out.
Now, however, I am more optimistic. We have Jack Rubinacci tirelessly reaching out to musicians and artists, initially within his own network and now far beyond. It's becoming a bit of a snowball effect whereby more and more of them are willing to speak out; Jack is recording videos with each of them. So far, we haven't gotten any international A-list celebrities, but definitely people who are well known within a certain circle, e.g., one of the most popular singers in Norway, and a music producer who has worked for U2, Paul McCartney, Pearl Jam, Sheryl Crow and many more famous artists.
@Markku said to me the other day that for the first time since he's been at this game (since 2011) he is starting to believe that maybe we can get a major celebrity involved. That would definitely be a game-changer!
I recently watched a few minutes of Prof. Langguth's lecture. However, when the question came up about how he would allocate 50 million, and he said he would invest it in existing treatments like CBT, it made my stomach turn. That's not the stated goal of Tinnitus Quest.
You're right, this is not the stated goal of Tinnitus Quest, and I agree his answer was not the most inspiring.
I just went back to the recording to check his answer to that question, and he mentioned so many things, from brain stimulation to physical therapy to sound therapy, to CBT, to pharmacology. He mentioned the importance of trying combinations of approaches (which he is right has barely been tried yet, so definitely worth a try) and also gave the example of how Lidocaine can silence tinnitus completely in many people, which demonstrates that it can, in fact, be done, and that gives him hope for a cure.
Still, you're right; there was not a unique, fresh, out-of-the-box idea in there. We hope to get that from young researchers who will be applying for our grants. Nevertheless, we can benefit from Dr. Langguth's deep expertise in study methods and design to help create the parameters for our grants program. The ultimate decision-making power will lie with the Executive Board, though (myself,
@Markku, Sven, Dirk, and Hamid), and you can rest assured that we will only be funding new ideas that could really silence tinnitus.
I found the Q&A with Dr. Langguth to be rather uninspiring.
The main topics discussed were CBT and tinnitus disorder, both of which were frequently mentioned. A few questions were asked about XEN1011 and Lenire & Dr. Shore devices. Dr. Langguth mentioned that Lenire is a good option for some patients when compared to other alternatives. Did he hint at Auricle conducting another 'bigger trial'? It seemed so, especially after he spoke at length about inadequate blinding in previous studies.
He also mentioned that Dr. Djalilian's protocol could potentially be beneficial for intermittent tinnitus, which was at least a refreshing moment of honesty.
Regarding hyperacusis, he occasionally prescribes Clomipramine, with some success.
Unfortunately, there were no questions about middle ear implants or Neurosoft. I would have liked to hear his opinion on that research.
Thanks, I can understand your sentiment. I think this Q&A will be more beneficial to someone who is not as deep into the research as you, i.e., to get a general overview of the field. So, I still think it has value in that sense, and many of such people might also be potential donors. See also my comments above in response to
@Tim Dziwisch. No one submitted questions on middle ear implants or Neurosoft, that's why I didn't ask about that
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