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  • Users: Hazel
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  1. Hazel

    Introducing Tinnitus Quest

    To everyone who asked whether our live events are recorded (@IYIiKe, @EDDTEKK and others), yes they are! You can watch all past events on the Events page of the Tinnitus Quest website. Absolutely, we should do that. However, you may have noticed that Tinnitus Talk underwent a bit of a makeover...
  2. Hazel

    Introducing Tinnitus Quest

    Thanks for asking. There's no research news yet, because we need time to raise enough funds to start giving out grants. So the progress so far is kind of boring organizational stuff -- which nevertheless are very exciting for us, as all of it brings us closer to our goal of silencing tinnitus...
  3. Hazel

    Introducing Tinnitus Quest

    Hey, Nick! Thanks once again for being an active participant in our events. One thing that became abundantly clear to me—especially during this Q&A, more so than the previous ones—is how shockingly low the general level of knowledge is among 90% of tinnitus sufferers. This became apparent from...
  4. Hazel

    Announcement Welcome to Updated Tinnitus Talk!

    Yeah, we're trying to re-add that now, thanks! :)
  5. Hazel

    Introducing Tinnitus Quest

    Hi all! Lots of interesting comments and ideas in the last few days. I was off organizing and celebrating my mom's 80th birthday yesterday (it was great) and back now, so let me respond to the latest posts: It's not a crazy idea to collaborate with them. We are in touch with Dr. Shore, Jon...
  6. Hazel

    Introducing Tinnitus Quest

    Hey! Yes, I recall speaking to Dr. Galazyuk at the 2023 ARO conference. Of course he’s free to apply for a grant once we open up for applications. One thing I want to note, not be a bummer or anything, is that there have by now been quite a few drugs that seemed promising in animals but failed...
  7. Hazel

    Introducing Tinnitus Quest

    I do agree that important progress has been made! But according to what I know, none of the things you mention have proven to be a silver bullet yet. I don't think very highly of Lenire at all, which the company itself has admitted is merely a habituation aid. I am hopeful, but I have a good...
  8. Hazel

    Introducing Tinnitus Quest

    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...
  9. Hazel

    Introducing Tinnitus Quest

    Yes, we're looking into building a counter into the website that tracks the total amount raised. Coming soon, hopefully. We have now raised about $200k -- most of which comes from high-net-worth individuals and about $7k comes from website visitors (over a period of just two weeks, so that...
  10. Hazel

    Introducing Tinnitus Quest

    Just to clarify, even though we established in Germany, we are operating worldwide and will be funding research worldwide. A trip to Germany thus might not be necessary :) We are also seeking to establish ourselves as a 501(c)3 in the US. Yes, that is indeed what we are doing. We, in fact, got...
  11. Hazel

    Introducing Tinnitus Quest

    Please note that registration is now open for the following live public events: 18 September - Q&A with Dr. Berthold Langguth 5 October - Q&A with Dr. Dirk de Ridder 26 October - Ask Us Anything with the full board of Tinnitus Quest Just go to the Tinnitus Quest homepage and scroll down to...
  12. Hazel

    Introducing Tinnitus Quest

    Hi Tim, thanks for wanting to help out. The reality is that we've been swamped with literally hundreds of emails with questions, volunteer applications, and applications to take part in the Patient Board. But at the moment, we have to focus our energy 100% on a successful launch. This week, for...
  13. Hazel

    Introducing Tinnitus Quest

    That's awesome, thank you so much :) Our Scientific Board has yet to establish the specific criteria for our grants, so I cannot really answer those questions. These are, however, the perfect type of questions to ask during our Ask Us Anything event on 26 October -- you can register on the...
  14. Hazel

    Introducing Tinnitus Quest

    We have now made the recording of the Q&A public, watch it here: That is correct; Tinnitus Quest is not set up to fund the 'commercialization' of new treatments or technology -- meaning all the steps that are required after initial proof of concept studies, related to later phase clinical...
  15. Hazel

    Introducing Tinnitus Quest

    Yes, it will! :)
  16. Hazel

    Introducing Tinnitus Quest

    Ok, I'm still struggling a bit to understand your issue. If I understand correctly, you're annoyed with the researchers who are trying to get cochlear stimulation technology to market, because it's been 40 years since the technology was discovered. But how is that the fault of the researchers in...
  17. Hazel

    Introducing Tinnitus Quest

    Thank you so much for your trust in us, Colin! We'll do our best for the community -- everyone suffering from severe tinnitus deserves better care and treatments! Thank you for your support, and for encouraging others to support Tinnitus Quest, Tim! You are right that recurring small amounts...
  18. Hazel

    Introducing Tinnitus Quest

    There are no impediments to research collaboration as such, apart from people being protective of their work and worried about someone else stealing their ideas (which does actually happen occasionally). But mostly, it's about the fact that there are very few incentives for collaboration...
  19. Hazel

    Electrical Stimulation of the Cochlea for Treatment of Chronic Disabling Tinnitus

    In case you missed the announcement, Tinnitus Quest has a live Q&A with Dr. Djalilian coming up: → Register to take part in the Q&A with Dr. Djalilian here!
  20. Hazel

    Introducing Tinnitus Quest

    Thanks! It's very helpful when others share our content rather than just us sharing it everywhere :)
  21. Hazel

    Introducing Tinnitus Quest

    As previously announced, we have now opened up registration for our first public Q&A session, featuring Dr. Hamid Djalilian. There will be similar sessions featuring Dirk de Ridder and Berthold Langguth, and we'll also have an "Ask Us Anything" session, so stay tuned :) But for now, → register...
  22. Hazel

    Introducing Tinnitus Quest

    We invited her to our first online event for researchers that occurred on 19 June (it was for researchers only, but we published a report about it on the website, and some videos to follow), but she declined. From having engaged with her previously, I do indeed get the sense that she's 100%...
  23. Hazel

    Introducing Tinnitus Quest

    I concur totally with the need for more awareness. But when running a non-profit it's important to focus on the things you're good at and stay targeted in your mission. We want to be able to tell donors that we're 100% focused on finding a cure and that 80% (or whatever, we still have to...
  24. Hazel

    Introducing Tinnitus Quest

    We're proud to show you guys our first two videos! This one is a general introduction to Tinnitus Quest. It summarizes in one minute what we are all about. It will probably also be the first thing we post on social media once we're ready to go with that (very soon!): And in this video, the...
  25. Hazel

    Introducing Tinnitus Quest

    Registration means we'll have a 'sign up for the Q&A' button on the Tinnitus Quest website, where you can leave your details in order to receive follow-up information about the Q&A, including the link for joining the live event. We have some work to do to figure out the process and automate it...
  26. Hazel

    Introducing Tinnitus Quest

    Hi Tim, thanks for wanting to volunteer! Please give us a few weeks to get back to you as we're still very busy with our launch. I'll be interviewing potential volunteers probably in September :)
  27. Hazel

    Introducing Tinnitus Quest

    Thanks for wanting to donate :) As stated in my first post, the donation function is not active yet. That's because we only just legally established and are waiting for our bank account. That's also why, for now, we are only promoting Tinnitus Quest on Tinnitus Talk (so you guys are getting the...
  28. Hazel

    Introducing Tinnitus Quest

    Unfortunately, this is indeed the typical response. People want a solution but they either don't want to help out, or they are so jaded from all the hypes and scammers that they don't trust anyone. That said, we've only just launched, so we need to keep chipping away at it, and keep trying...
  29. Hazel

    Introducing Tinnitus Quest

    @Nick47 was refering to the timeline on the homepage. We haven't yet created a registration form for the Q&A though, so stay tuned!
  30. Hazel

    Introducing Tinnitus Quest

    Excellent points, @Nick47! We've certainly been frustrated over the years by some of those groups not allowing any kind of 'promotion'. For instance, we've run surveys to collect data for academic research, no commercial aims whatsoever, and still the admins would ban us. But indeed, if someone...
  31. Hazel

    Introducing Tinnitus Quest

    Thank you! We will have to wait six weeks or so to give some other folks a chance to sign up as well, and then it depends on how many people we have and what they each bring to the table. But I feel there should be an opportunity for anyone who's interested to contribute in some way. We'll...
  32. Hazel

    Introducing Tinnitus Quest

    Yes. Again, it’s a matter of focus and funding. The hyperacusis angle is in our opinion well covered by Hyperacusis Research — they have almost the exact same operating model as Tinnitus Quest but then for hyperacusis. We’ll be seeking to align and collaborate with them where possible.
  33. Hazel

    Introducing Tinnitus Quest

    Good question, and I completely agree regarding the importance of point 1. It's all a question of funding and timing though. Fundamental research takes a LONG time and a LOT of funding to make the translation to actual treatments. With less funding and wanting to make quick progress, we felt...
  34. Hazel

    Introducing Tinnitus Quest

    Too many people are left alone to suffer in ‘silence’ with their tinnitus. You all know this, of course, but the trouble is convincing the rest of the world that tinnitus is a serious problem that deserves serious attention and funding, a problem that requires more than just behavioral...
  35. Hazel

    Success Is a Matter of Perception

    Hey there! It's hard to recall exactly so many years later. I do clearly remember in the first few months not being able to watch a movie or listen to music without constantly hearing my tinnitus over everything. I suppose the change was rather gradual. As in, the number of times during the day...
  36. Hazel

    Success Is a Matter of Perception

    Basically, I would say my quality of life is back to normal (whatever normal means, haha). I would still say tinnitus makes my life more difficult at times, but it's definitely faded into the background and I don't even think of it on most days.
  37. Hazel

    Success Is a Matter of Perception

    Thanks for your kind words, and it's good to see that people are still reading my story years later :) The good news is that it has been an upward trajectory for me. These days, my tinnitus only bothers me when I'm very tired or stressed. I am still closely involved in the forum and our...
  38. Hazel

    Can Blocking HCN2 Ion Channels Silence Tinnitus? RNID Funds Prof. McNaughton's Team to Find Out

    Hey! We've been too busy with other projects like a website overhaul and an exciting new research project that we'll be announcing next week. Next to day jobs and family obligations, there just hasn't been time for editing, audio cleaning, transcribing, subtitling, writing blurbs, and all the...
  39. Hazel

    Episode 22: Revisiting a Friend of Tinnitus Talk — Dr. Josef Rauschecker

    Hey there! I'm not sure where you are looking, but from what I can see the transcript is there and looks correct? Just go to the episode page and click on the "CC" button to the right-hand side of the player, and the transcript should show up. Please let us know if you are still having any issues!
  40. Hazel

    Tinnitus Research Initiative (TRI) 2024 Conference

    Here is also Dr. Fatima Husein's presentation on "Electrophysiological measures of hyperacusis, misophonia and tinnitus." And the conference group picture, if you're interested :)
  41. Hazel

    Tinnitus Research Initiative (TRI) 2024 Conference

    OK, I'm back as promised with a longer report on the conference. My Key Takeaways In no particular order, here are some interesting new things I learned during the conference. Keep in mind that there were many parallel sessions, so one had to pick and choose what to attend; hence, this does...
  42. Hazel

    Tinnitus Research Initiative (TRI) 2024 Conference

    Indeed! This was in fact the symposium that I organized. We recorded the whole thing, but I'll post some notes here soon. And yes, objective measures were part of the discussion, mainly covered by Joel Berger from University of Iowa.
  43. Hazel

    Tinnitus Research Initiative (TRI) 2024 Conference

    Just a quick note to promise that I will get back in this thread soon with a lot more detailed updates! Some quick responses to questions/comments above: Yes, there were quite a few presentations, and in general, I have noticed an uptick in research on sound sensitivity topics in the past few...
  44. Hazel

    New University of Michigan Tinnitus Discovery — Signal Timing

    As you will all have probably guessed, no one from Auricle was present at the TRI conference in Vancouver. This is clearly part of their continued radio silence on the topic of coming to market. There were some oblique references to her work in other presentations on bimodal stimulation, among...
  45. Hazel

    Yes, we can do that! Just met him again at the TRI conference and he's very approachable. I...

    Yes, we can do that! Just met him again at the TRI conference and he's very approachable. I really like his work...
  46. Hazel

    Can Blocking HCN2 Ion Channels Silence Tinnitus? RNID Funds Prof. McNaughton's Team to Find Out

    Update: We are interviewing Prof. McNaughton this coming Tuesday. We already have an episode lined up for publishing in May (arguably one of our most exciting ones to date), but Prof. McNaughton's episode will come right after that. Please submit your questions below!
  47. Hazel

    Tinnitus Research Initiative (TRI) 2024 Conference

    @ZFire, thanks for the encouraging words, we appreciate it! Do let us know if you have specific comments or thoughts on this topic and I can work it into my presentation. @BlueMoon86, I'm sorry to hear you're struggling so much. Thank you for your kind and generous donation; we'll do our best...
  48. Hazel

    Tinnitus Research Initiative (TRI) 2024 Conference

    TRI Conference Background The Tinnitus Research Initiative conference is back, and this time it's in Vancouver, Canada, from 10-12 June. As some of you will know, TRI is the biggest tinnitus research conference. You can find the conference website and program here. What's New This Time? To be...
  49. Hazel

    Get 'Behind the Scenes' Insights from Tinnitus Research Conferences

    Awesome, look forward to connecting on Sunday! :)
  50. Hazel

    Get 'Behind the Scenes' Insights from Tinnitus Research Conferences

    Hey, sorry to hear that! If you're really keen to join, and you cannot afford 2 dollars (since you can cancel the month after if you can't manage it monthly), then please contact us here and we'll get you an invite :)
  51. Hazel

    The Association for Research in Otolaryngology (ARO) 2024 MidWinter Conference

    Supplementing @TuxedoCat's great write-up, here's the poster and sound bite for you:
  52. Hazel

    The Association for Research in Otolaryngology (ARO) 2024 MidWinter Conference

    In addition to @TuxedoCat's excellent write-up, I've downloaded the poster and accompanying sound bite for you:
  53. Hazel

    The Association for Research in Otolaryngology (ARO) 2024 MidWinter Conference

    FYI, I have also been in touch with Megan about a podcast recording, to which she has agreed, but we have yet to schedule a date :)
  54. Hazel

    The Association for Research in Otolaryngology (ARO) 2024 MidWinter Conference

    Hey! Sorry for the late response. That's an intriguing story re SENS-111. Unfortunately, for all of us, what happened to the drug will remain a mystery. As you noted, even though the company did two talks and three poster presentations, SENS-111 is not mentioned in any of them. If we had...
  55. Hazel

    Get 'Behind the Scenes' Insights from Tinnitus Research Conferences

    Wow, some really pertinent questions there from @ZFire, thanks! And good to hear from you @Joeseph Stope, I fondly remember our (all too brief) meeting in Dublin! Thank you for the kind words too :) Oh and I hope to 'see' you both this Sunday, if you can make it!
  56. Hazel

    Get 'Behind the Scenes' Insights from Tinnitus Research Conferences

    In the past year, three of our volunteers – @Hazel, @TuxedoCat, and @gillme – have attended the Tinnitus Research Initiative (TRI) and Association for Research in Otolaryngology (ARO) conferences. You may wonder: What’s it like being the only patient at a research conference? Are researchers...
  57. Hazel

    The Association for Research in Otolaryngology (ARO) 2024 MidWinter Conference

    Hey there, we just had a debrief call with @gillme and @TuxedoCat -- our two intrepid volunteers at the conference. They spent a lot of valuable time networking, but found the scientific content hard to digest, so the updates will be more on the former, but they will do their best to answer any...
  58. Hazel

    TRT (Tinnitus Retraining Therapy) Made My Tinnitus Much Worse

    Hi Karl, Welcome to the community! Glad to hear you've found our resources helpful so far. In terms of research, you should of course also check out the Research News section of Tinnitus Talk. But we're also very curious to hear more about your experiences with TRT? What happened and how did...
  59. Hazel

    Tinnitus Week 2024: What Should Your Neighbor Know About Tinnitus?

    Wow, some very heartfelt responses here! I was almost afraid of getting nothing back, since people have (understandably so) gotten jaded. But we can certainly work with this. We've done similar campaigns already, but those were targeted more at researchers -- it's a smaller manageable group of...
  60. Hazel

    The Association for Research in Otolaryngology (ARO) 2024 MidWinter Conference

    Hey all, just a reminder that there's still time to submit your questions or requests before Linda and Megan attend the conference :) See the first post in this thread for link to the conference program.