Support Dr. Rauschecker's Tinnitus Research — a Man Who Really Means to Make a Difference

Discussion in 'Awareness & Fundraising' started by dfl, Oct 7, 2018.

    1. reggie green
      Balanced

      reggie green Member

      Tinnitus Since:
      03/08/2001
      I may have to reschedule the appointment because of work, sorry.
       
    2. Deamon22

      Deamon22 Member Podcast Patron Benefactor Ambassador

      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma/Cold?
      Got an email from Fiona. I thought I would share it here, maybe someone wants to donate.

      Dear Friends,

      Please consider supporting the Dr. Josef Rauschecker's tinnitus research at Georgetown University Medical Center this Giving Tuesday.

      Help us continue his important research. We have raised $1,745 towards $50,000 goal.

      Thank you to everyone who has already supported his effort!

      *100% of funds raised will go directly to Dr. Rauschecker's research*

      --
      Fiona Zhu (S'17)
      Assistant Director of Development, GUMC Advancement
      Office of Advancement, Georgetown University
      3300 Whitehaven St NW, Suite, 4000, Washington, DC 20007
      p: 202-687-3709​
       
      • Like Like x 1
    3. Margaret21

      Margaret21 Member

      Tinnitus Since:
      07/2017
      Cause of Tinnitus:
      Unknown
      Greetings @Markku and everyone. This fundraiser needs global awareness perhaps from celebrities that have opened up about this drastically life changing condition? Is there anyone who can connect with them to share the fundraiser link on their Twitter, Facebook, Instagram accounts? Then it would be more realistic to make the goal?

      Thank you for listening.
       
    4. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      *Click* Just bumping this post during the 2019 Tinnitus Week. Once again, amazing Podcast with Dr. Rauschecker.
       
      • Like Like x 3
    5. TimmyC
      Innocent

      TimmyC Member Benefactor

      Location:
      Vancouver, WA
      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      ETD possibly, or neck and jaw, or maybe anxiety?
      I agree. Is there any way @dfl could raise more awareness on his social media? I know he did a video for Dr. Rauschecker in the past (he's awesome for doing that by the way), but there has to be a way to get more notice on Dr. Rauschecker. The TED Talk helped but only so much.
       
    6. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      The TEDx Talk did help heaps. I was thinking the next step could be doing a video presentation with Dr. Rauschecker on https://bigthink.com platform. Scientists and influential people of all interests are given space to talk about the things they want to, doing interviews and such. Big Think has a YouTube channel with a huge audience as well.

      "Big Think is the leading source of expert-driven, actionable, educational content -- with thousands of videos, featuring experts ranging from Bill Clinton to Bill Nye, we help you get smarter, faster. We aim to help you explore the big ideas and core skills that define knowledge in the 21st century, so you can apply them to the questions and challenges in your own life."​
       
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    7. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Can he apply for government grants? I just had time to read through this and found it to be so honest and real. On the link provided by @Deamon22 it was cool to see this:

      https://www.givecampus.com/jr9gny

      Podcast: In Search of a Tinnitus Cure — Dr. Josef Rauschecker

      Dear friend,

      Thank you for your continued support of Dr. Rauschecker's work. We wanted to share the link to Dr. Rauschecker's podcast episode with Tinnitus Talk with you.

      The interview covers a wide range of topics, from Dr. Rauschecker’s own experience as a tinnitus patient to his theories on how tinnitus manifests in the brain. He hypothesizes on links with other brain disorders like depression, and the role of stress in triggering tinnitus. Dr. Rauschecker is hopeful about the prospect for a cure, but also talks about the obstacles to overcome, specifically the dire lack of funding for tinnitus research. He also discussed the role that patient communities can play in resolving this.

      We hope you will enjoy the podcast and leave your feedback on the discussion forum on Tinnitus Talk, please click here.

      "We are grateful for every dollar that goes to tinnitus research. More support is needed to combat this devastating disorder which is pervasive and destroys lives." - Dr. Josef Rauschecker

      Please do not hesitate to reach out if you have any questions. You can reach me at Fiona.Zhu@georgetown.edu or 202-687-3709.

      Thank you again for your generosity!

      Sincerely,

      Fiona Zhu
       
      • Like Like x 1
    8. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Email with updates from Fiona Zhu:

      “Dear all,

      Thank you for your continued support of Dr. Rauschecker's work. He would like to share the following updates with you.

      "In our ongoing studies, which are conducted by Dr. Lars Rogenmoser (Visiting Research Scholar) , we are pioneering a new diagnostic tool for tinnitus detection based on eye blink behavior in combination with tones varying in frequency and loudness. Until now, 18 tinnitus patients are enrolled, of which 7 have completed testing, including audiological testing and tinnitus matching.

      In parallel, we are testing a similar experimental paradigm in animal studies (nonhuman primates) that is intended to lead to new treatment
      techniques
      .

      We are also exploring the connection between tinnitus and sleep.

      Dr. Rauschecker is presenting a lecture about his tinnitus research at the International Tinnitus Research Initiative (TRI) conference in Taipei, Taiwan on May 18, 2019. He has also been asked to speak at an invited symposium on tinnitus sponsored by the Association for Research in Otolaryngology (ARO) in San Jose, California in February 2020."

      ----
      We have extended our online giving campaign to June 30, 2019. Thank you to everyone who has contributed so far. If you would like to make a gift, please click here: https://www.givecampus.com/jr9gny

      Your support has allowed Dr. Rauschecker to secure a pilot internal funding for his tinnitus research. THANK YOU!

      Every gift from the GiftCampus platform will be additional funds for Dr. Rauschecker to purchase additional supplies and enroll more patients for his study.

      Please do not hesitate to reach out if you have any questions.

      Best wishes,
      Fiona Zhu”
       
      • Informative Informative x 3
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      • Winner Winner x 1
    9. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      This is so important. Understanding the pathology of tinnitus is absolutely key to treating the condition. Developing new diagnostic tools is the right way to go. It will help with tinnitus subtyping → personalized medicine → tailored treatments with the best response and highest safety margin.

      Let's donate please (almost halfway to reach the goal!):
       
      Last edited: May 6, 2019
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    10. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      The less researchers focus on regenerating cochlear hair cells and repairing lost or damaged synapses, the more likely it will be that most of you are going to get old and die before there is a cure available to you.

      That is the vast majority of tinnitus causes. That is the etiology. Figure out that AND THEN look into curing the other cases.

      IMHO Dr. Rauschecker may know what he knows but he is not focused on healing the damage to our hearing.

      Regenerating hearing has BEEN PROVEN to work IN HUMANS. IT IS POSSIBLE AND I KNOW THIS FOR A FACT. Everything else, and I mean everything is a waste of money until we can learn how well regenerating hearing deals with tinnitus.
       
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    11. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      I don't know much about it - do we know that regenerating hearing will get rid of tinnitus? Has this been shown in the trials, or have the researchers suggested this might be the case?

      My point being that if we go fully down the route of only supporting regenerative hearing and it has no effect on tinnitus, where are we then? I think Jiri is absolutely right in that the key to curing tinnitus is understanding the pathology. Then we will know what will fix it.
       
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    12. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I do.
      Not publicly.
      Yep, one of the inventors of FX-322.
      Uh, a massive question answered??? Just like the failure of AM-101, we learned that doesn't work.

      But it will alleviate tinnitus.
       
    13. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      That would be our best bet for sure. Not enough anecdotal cases from Dr. Shim and Frequency Therapeutics is a question mark on any time frame to be available to the public if it works out as planned.
       
      • Agree Agree x 2
    14. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Well they are way out in front. Like way out in front.
       
    15. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      Do you have a contact/some insider knowledge of the trials? I'm asking genuinely by the way, because it sounds as though you might.

      Very encouraging that one of the inventors believes (or knows?) that it will help, but personally, I would want to see proof of this before putting all my eggs into that basket. I am NOT saying that it shouldn't be funded, of course it should - it's an amazing advancement - but it doesn't mean that funding other research efforts is a waste of money and all money should go to regenerating hearing, just so we can potentially rule it out.
       
      • Agree Agree x 2
    16. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      Not really. I don't want to take hope away from anyone but companies like Frequency Therapeutics are focused on treating primarily hearing loss and not tinnitus (correct me, if I'm wrong). I've not seen a paper yet from them stating that their curative research targets tinnitus. I wish hard that silencing noise-induced tinnitus will be a superb side-effect of FX-322. Give me valid data to support that theory.

      Moreover, who is to say that there cannot be research devoted to both treatment and better diagnostics of health problems at the same time? These two fields go pretty much hand in hand.

      In addition, it's now without a question that there's more than just one type of tinnitus. Typical tinnitus after acoustic trauma is your standard 'eeeeeee' tone. It doesn't change and it's always there relentlessly at the same volume. With the level of hearing protection some members present here it's really not likely that they keep suffering additional acu traumas (vacuum cleaning etc.). Yet a considerate number of them keeps getting worse - developing new tones, terrible fluctuations so and so forth. So logic says something else is at play here. Some can modulate their tinnitus with clenching the jaw, others can achieve this even with eye movement. Then there's head noise, intermittent tinnitus, fleeting tinnitus, depression/stress/anxiety related tinnitus, auditory epilepsy, drugs, infections, head/neck injury t, all kinds of t.

      Tinnitus is "just" a symptom of other underlying health condition. Find where the problem is, treat it accordingly and you might well end up with just your "eeeee" tone in the damaged ear (that is said most people can tune out and got no problems with). Then regenerative medicine or a bimodal neuromodulation or a combo of both will likely fix that. See why understanding the pathology of tinnitus and better diagnostic tools are so important? Tailored treatments with the best response and highest safety margin.
       
      • Agree Agree x 2
    17. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @JohnAdams

      This comes across as a scare tactic that discourages and somewhat bullies people from helping other areas of research. I would think we simply need more evidence to support this statement before using it, but I don't disagree that knowing the answer to the regeneration of hair cells/synapses would be extremely helpful.

      Hearing regeneration appears to have adequate resources from the free market, what are we to expect if it fails to alleviate the experience and there were no other concurrent irons in the fire studying its pathophysiology? It may have the straightest line to telling us "something" but I think it's irresponsible to cast everything else aside.

      No he's not. He's trying to understand what exactly is going on in the brain of those people experience both hearing loss and t, which will come in handy if the brain's plasticity somehow doesn't recover if hearing is regenerated. The success of cochlear implants and reductions in the experience tell me that's not likely the case but we'll see hopefully.

      This is not appropriate in my opinion. Again you may be looking at the quickest way to tell us "something" but heaven forbid regeneration fails to achieve the outcome and we start back at square one. I think it's best to have multiple lines of research occurring by specialists in their respective fields who can provide a complete picture of what is actually going on. That to me seems like the recipe for a complete and total cure for all.
       
      • Agree Agree x 4
    18. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      @JohnAdams

      Every single post I see of yours you talk about your opinion as being fact. You are convinced that regeneration will cure all tinnitus which at this point is far fetched speculation and now you are actually implying Dr. Josef Rauschecker's work is a waste of time.

      You do know, that the exact mechanism of tinnitus is still unknown and is based on theories? Are you also aware of the heterogeneous origins of tinnitus?

      Rather than focus all your hopes in regeneration being the holy grail, with a condition like tinnitus, you should be open to all avenues of different researchers' stance on developing a treatment for tinnitus given its complexity and heterogeneous nature.

      That’s how conditions are solved after all.
       
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    19. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      This is what I was trying to get at. Do we have any actual proof that regenerating hearing (a miracle in itself) will do anything at all for tinnitus? It doesn't sound as if we do yet.
       
      • Agree Agree x 1
    20. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I have had my hearing regenerated.
      If we're talking about mindfulness then it is @David.
      There is none yet, only stuff like the earplug experiment.
      Why is this so hard to see?
      Person is exposed to very loud noise, person immediately gets tinnitus. Why would healing that damage not reverse the tinnitus as tinnitus is obviously a symptom of hearing loss in this scenario?
      And the most prevalent, so the focus should be there.
      I think we already know what the etiology/pathology is in the case of NIHL.
      BOO!
      The world will end.
      Well, mindfulness should be flushed like the turd that it is, and if Dr. Rauschecker can't run a fundraiser correctly, or keep up with concurrent tinnitus research, (obviously @Hazel knows more about the world of tinnitus research than he does) then he's just going to be splashing in the water making noise like a dying duck and wasting time.
      I'm excited.
      It won't, that is, if it can completely heal damaged hair cells, regrow new ones, and repair synapses.
      Maybe you're right, but people taking money for tinnitus research and giving it to mindfoolness studies are contemptible.
       
    21. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      So it helped your tinnitus? If so, wow, amazing. Don't know the extent of your hearing loss before, but if your tinnitus is reduced, is it because you can now hear better (as the tinnitus is covered better by background noise) or do you think the damage has actually been reversed?

      I'm not including mindfulness in the research we should be funding by the way. Absolutely not. We already know there is some benefit to mindfulness/CBT for some people - no more please. Let's have a treatment or a cure.
       
    22. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @JohnAdams I don't consider Dr. Rauschecker's research to be mindfulness related. I think it's very much in line with a cure/actual treatment based approach which was the message I was trying to convey.

      This quote here (no offense to @Hazel who clearly knows more than 99% of the world's population on the subject) I think greatly diminishes the contributions to tinnitus research Dr. Rauschecker could make and is grossly unfair to him.
       
      • Agree Agree x 1
    23. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      I think you mentioned somewhere else that "it's hearing loss" but if you look at all the centres in the brain that take part in the creation of tinnitus then the answer is: We don't fully understand it (yet).

      Cochlea → Formatio reticularis (Hirnstamm → Mesencephalon → Talamus → Cortex) → The lymbic system

      IMG_0193.jpg

      P.S.: I'm not trying to school anyone and this is a pic from 2004. I'm being optimistic that at this point in time we already know more about it. Advancements in imaging technology should help greatly.
       
      Last edited: May 6, 2019
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    24. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Yes, a lot.

      My hearing loss on an 8 kHz audiogram only showed 10-15 dB dip around 6.5 kHz in both ears. Not just covered by background noise, but diminished as a whole. I think I had more hidden hearing loss than anything else.
      It's not, he isn't a mindfulness goon.

      @Watasha, @Hazel not only informed him about bimodal stimulation, but had to correct him about its existence, and to me, that is unacceptable. He should be studying the subject better if he is genuinely interested in it. Not to mention he super sucks at fundraising.
       
    25. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Can't disagree that it was disappointing to hear he hadn't heard of of neuromodulation. How do you know he sucks at fundraising? Are you aware of their grant activities taking place offline?
       
    26. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      He has a diagram of how much money he has raised and it's been months and he still isn't even halfway there. He's at a Jesuit college. I'm wondering if he has tracked down any of them to ask for a grant. They are very rich BTW. Just the gold teeth in one of their many relics alone would easily pay for this.
       
    27. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      So not a lot of 'tested' hearing loss, but it still made a huge difference to you. That's great.

      It's a pity it didn't eliminate the tinnitus - perhaps combined with something else like neuromodulation it could do?

      I hope it's coming out soon - hearing regeneration sounds so futuristic it feels like it could be lightyears into the future.

      Exciting times, people.
       
      • Agree Agree x 1
    28. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      He's now halfway there, after they today dropped the goal from $50,000 to $10,000.

      He's one of the best researchers in the whole wide world and he can't raise even $10,000, it's heartbreaking. Tinnitus sufferers don't care about funding research. We don't DESERVE a cure.
       
      • Agree Agree x 1
    29. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      So you think he includes grant funds on his public fundraiser? I highly doubt it.
       
      • Agree Agree x 1
    30. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Several people have suggested this to me.
       

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