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On the one hand, you’re right; people sending Susan & Auricle accusatory or threatening emails has undoubtedly had a negative impact. We're not talking about innocent emails here congratulating them on their efforts, but rather self-entitled and vitriolic ones (or obsessive, like hundreds of...

Yes, it will be recorded and published afterwards. In the original registration email you received after entering your details, there was a link in the calendar event that you can use to join. One hour before the start of the Q&A another email will be sent which has a "Join Webinar" button and...

Friday, August 30th, 8 am Pacific, 5 pm CET. Once we have the registration procedure ready, we'll announce it here and put up a link! This should happen in the next few days.

Bad news: Auricle has decided not to release any statement at this time. We're disappointed, obviously, as we were expecting to be able to give you some more insight. But they want to stick to their strategy of focusing on their mission rather than engaging with the public. Essentially, their...

After Matteo de Nora's initial donation to TRI ran dry, they were no longer able to fund research. They haven't funded research in a considerable time now. Nowadays, TRI's most visible activity is the annual TRI conference (which is also not actually organized by TRI, but rather by local...

One step ahead of you: we had a very informative 1-hour call with the CEO last week. It was of course all confidential, but at the end, we offered to draft an update for the community. We did that, and it's now being reviewed & edited by Auricle. Hopefully, it's ready for publishing later this...

With all due respect, your whole philosophy where someone needs to have severe tinnitus to develop an effective treatment for severe tinnitus is so beyond any logic that I cannot even find words for it. It's ill-conceived and just plain ignorant. Your own experience counters that logic of...

Well, many of those who have genuinely disabling tinnitus would come back to report of their success with Lenire (if there was any success to be reported about, that is.) Not everyone of course, but in our experience the severe sufferers are more likely to report back on things. We also...

The vast majority of "leading tinnitus clinics" are the ones to be questioned and be skeptical of, not the real-life experiences of actual patients here who have first-hand seen how mild tinnitus can turn into something that cripples you for life. The warnings you have received here are not...

I was curious about this. What Dr. Djalilian told me today when I told him I'd like to update the community:

I wanted to make some things clear with Dr. Shore regarding the Hearing Health Foundation webinar, and: The webinar will focus on the basic science to give an understanding of how the basic science first led to an understanding of how tinnitus develops in a brain circuit and then how this...

@Mpt was quite active back in the day, the staff exchanged several conversations with him, and there was no reason to suspect him of being a fraudulent account. We did have to ban him temporarily for breaking our rules, but that had nothing to do with his authenticity. @Clare B and @kelpiemsp...

This was Biohaven's response to us some time back:

Yes, it's frustrating to say the least. We posted this on our X just now:

I asked a follow-up regarding this:

Latest from today:

Hi @Nick47! Prof. McNaughton agreed to an interview, but our technical set up is maybe a little challenging for him. We always like to record in high quality, knowing how our audience can be hearing sensitive, and that creates a few extra steps rather than just having a quick phone call...

I'm pretty confident it's not his sock account. There are many reasons why I think so, but rather not go into specifics as to not give ideas to genuine sock puppets. Could it be a friend supporting him? That I cannot guarantee. Personally, I don't think @R. David Case is a scam artist or scum...

We have reached out to him. :thankyousign:

This is their stance, from Jon Pearson, CEO of Auricle: Basically, I would not hold my breath. They are working on it, they are doing their best (I sincerely believe so based on my interactions with Jon and Susan), but this can take some time still. We just need to be patient and understanding.

Yeah, correct. She didn't present anything new there or at the symposium we all didn't already know about (I had confirmed this with her earlier).

Hi @Nick47. I like your idea, but I share some of the same concerns with you. I usually don't want to publicly disparage any organization, but in this case I think it's prudent to explain why there's such an apparent lack of collaborative angle with the ATA. It is not related to this idea of...

Done. :beeranimation:

I sent him an email to tell that people are curious, let's see if we can get update! :) EDIT: Tyler already kindly responded, he said he would update all of us soon, maybe already this evening.

Here's a further response by Dr. Shore from today:

Would she have been able to do all this work, an admirable career in the field, with disabling tinnitus? I guess it depends what your definition of disabling tinnitus is. It does rub me the wrong way though to suggest that she would do better or be more motivated if she suffered more from...

Nope. And she of course also consulted others in the company, so it's definitely company policy not to discuss it.

:thankyousign: everyone for the kind words. I know there are open questions that we didn't get the answers for, but we just have to accept the fact that, at the end of the day, it is a business they are running, in a very regulated sector, and it is understandable if they think it's better to...

We ended up with about 60 questions but I don't think Dr. Shore will be able to answer all of those even if she wanted to - I made the suggestion that we regardless list the questions that couldn't be answered so people know what cannot be answered and hopefully that further helps people refrain...

Oh we did first try several AI tools! Some of them wouldn't accept the long list of questions, and when it would, it couldn't really understand what is a question Dr. Shore can in theory even answer, what questions are more important than others, and finally grouping similar questions together...

Many did. In total there were nearly 900 questions. We curated them and sent them to Dr. Shore. A lot of the questions were interesting, like... people went over their medical history and asked if drug x might have caused their tinnitus, or if they should sue their doctor for negligence, or if...

We will ask, but you shouldn't expect that we can deliver that information. Based on our meeting with her, she won't be able to say yes or no.

She has not made any announcements whether they have submitted to the FDA. Anyone emailing her will waste their and her time. She has stressed it many times that when they have news they can disseminate publicly, they will. She knows people want more transparency regarding the regulatory...

Update on Dr. Shore interview We had the privilege to speak with Dr. Shore earlier today. She came across as someone very passionate about her work, and it's obvious she profoundly values the integrity of the research process. Her preference is to do a written interview first, followed by a...

I for one appreciated the push by @Damocles - sometimes people need that kind of wakening up. I didn't sense any malicious intent. And like he went on to explain, he comes from not a financially strong position at the moment. He could have put that donation he made towards paying off his debt...

Ask me once we have interviewed Dr. Shore. I tread carefully after how Lenire turned out to be. But the situation here is different (substantially more rigorous research, studies, control groups, results, etc.), so I do look forward to the real world results. @Hazel is on standby to fly to...

This is a good idea. I'm sure @Hazel will put out some feelers. I bet not many are aware of this latest study being published yet since the conference is this coming week and the study was published just on Friday. But in general it's also nice to get some thoughts from the folks there (like...

Dr. Shore shared the following with us.

Yes, but the exact time is to be determined, and your conclusion is correct :)

I don't like speculating. For all we know, there could be a delay for reason unbeknownst to us, or things could advance quicker than we thought. All these timeline speculations I've seen don't mean anything to me until we hear it straight from the horse's mouth. Will it work? I will only say...

We'll be there. I don't think Dr. Shore will (I'm not 100% sure though), at least she's not listed as having a slot for a presentation. From our previous experience, not many US-based researchers attend TRI conferences, it's mostly EU folks there.

With all due respect, Michael, this is, pardon my French, horseshit. If I had the "suicide disease", trigeminal neuralgia, would you gladly simplify it and put it under "headache" or "pain"? What do you even mean by "it's as if a person wants to convey to others the dire straits they are in"...

I'm leaning towards that device being in the "never happening" category, whatever it might have been. The way how the document lacks any basic information whatsoever raises some immediate red flags. Frankly, makes me think it's everything but innovative. What's the basic science/hypothesis...

I imagine @AnthonyMcDonald is probably refering to how Trobalt (Retigabine) seemed to help some people's tinnitus but the side effects were too heavy and the drug was withdrawn from market. Now Xenon Pharmaceuticals have a drug called XEN1101 in clinical trials which is touted to have fewer side...

One of our researcher contacts commented on the results presented at the Palm Springs Hearing Seminar as follows. I can't wait for the paper to be published and having Dr. Shore on the Tinnitus Talk Podcast! In the end, it is a solid study, although the devil is in the details (which I hope...

...And even that is often fruitless - or worse, where you end up being called toxic and negative. God forbid we have a "Suicidal" thread, how much sh*t have we got from that? Because some people think we should only allow positive posts and sunshine and rainbows. It boggles the mind! I feel...

I've done the V5 23andMe. There are indeed 8 tested markers for the GJB2: c.35delG, W24X, M34T, V37I, c.167delT, c.235delC, S139N, R143W. Apparently I don't have this:

Hi Eric. Yeah, it's written in Swift. The developers suggested it because, based on the wishes we had for the app, they thought using AudioKit would be the best (or only) way to implement some of those features: https://github.com/AudioKit/AudioKit I'm not knowledgeable enough to say if React...

I'm sorry it's not available on Android. App development is exorbitantly expensive. The iOS version was funded by a very generous Tinnitus Talk member, but the Android version never came to be even though initially there were plans for it. It was a mistake of ours to publicly state it as a...

First I thought you were joking, because there are even some so-called professionals whose thoughts align with the above, and so I hoped you were being sarcastic. I have to say, if you were sincere, then your earlier post in another thread summarizes it well: Tinnitus is not the same for...