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. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      High-frequency hearing loss
      The tinnitus community is not known for giving financial support. Initially, Prof Rauschecker was trying to raise $50K, but then lowered the goal after a poor showing. $10K will not cure research, but $10K can be of use to a researcher. In addition, when the tinnitus community shows its support, researchers take notice and awareness is raised.

      Saying that you don't get what $10K is going to do and no wonder there is no cure and then not donating is a defeatist attitude. That, in part, is why there is no cure.

      Prof Rauschecker now has support from other sources, but in general, tinnitus research remains seriously underfunded. The voice of the tinnitus community should be heard through regulatory and other government channels that fund research at a much higher level of support.

      For example, Tinnitus Hub became a stakeholder in the development of guidelines by NICE in the UK and Tinnitus Hub submitted comments which included the need for research for effective treatments and cures. While NICE itself does not commission research it does influence funding needs.

      Tinnitus Talk members raised £5K in memory of Danny Boy and awarded the grant to Eloise Koops. Google Eloise Koops and tinnitus and see what comes up. You will see mention of Tinnitus Hub and the memorial fund - that's raising awareness.

      People with tinnitus need to become active, whether it's donating a few dollars to a researcher, participating in lobbying efforts, telling your story or raising awareness through education.

      There have been many ideas put forward on this forum and there are ongoing projects that require member support. If you can do something for the cause, please contact @Markku or @Hazel.
       
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    2. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This has forever been one of the main obstacles. The money going into tinnitus research and the awareness that is raised are both incredibly substandard. Many support groups don’t even allow fundraising; work that one out! I also find that there’s a disconnect between certain associations, researchers, and other institutions. The way things are at present is just far too insular.

      I get the impression that some charities want to see a cure - just so long as it’s them who finds it - rather than having a more connected worldview. I personally came across many roadblocks which really opened my eyes. The greater good clearly doesn’t matter.

      In my opinion, the tinnitus community needs to be more vocal on all fronts. Protesting on a support forum achieves nothing, for example, and the defeatist attitude of “it’s not worth giving a few dollars” is another big problem. There are millions of sufferers around the world and it would only take a few dollars from all of us to not only raise a significant amount that could achieve significant things, but it would also raise tinnitus’s profile as a debilitating condition overnight.
       
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    3. just1morething
      Benevolent

      just1morething Member Podcast Patron Benefactor Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      TMJ disorder, airplane barotrauma, noise exposure.
      Yeah, that is a drop in the bucket compared to the tens of millions FREQ, OTIC, etc. are working with. It seems likely that the small amounts raised for Dr. Rauschecker will be money down the drain. I really do like him though and hope he finds some relief for us with his limited funds.
       
    4. Watasha
      No Mood

      Watasha Member Podcast Patron Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      What evidence do you have that it will be "money down the drain"? Perhaps it's the difference between 1 and 5 test primates, or 20 and 40 human test subjects? If these researchers can achieve small scale successes as a proof concept, then they can get funding from larger agencies. This is what the abysmal ATA tries to accomplish. We can actually help with this, and probably better than they can.

      No amount is too small. A year ago Tinnitus Hub was bringing in ZERO dollars for podcasts. Now they are on track to bring in $3,156 US dollars next year. The average donor is around $5 dollars per individual. Now tell me $5 dollars a month doesn't make a difference? They are beating the heck out of ATA when it comes to good quality podcasts and they are doing it with far less resources.

      PS: I love Columbo, great show
       
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    5. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      He won't. Even if his theory is correct, how on earth would you, could you, filter specific sounds from the auditory system out of the human consciousness? He doesn't even have a pharmacological solution to this problem in sight. Science doesn't even know exactly how consciousness works in the first place. It's truly a dead end.
       
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    6. Watasha
      No Mood

      Watasha Member Podcast Patron Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      How in the world could you possibly put food in a box that somehow uses invisible electromagnetic waves to heat it up? There was a time when this notion seemed infeasible. The importance of Dr. Rauschecker's work is to develop a working model of the physiological elements associated with tinnitus and its perception. UNTIL we have this, trying to determine all treatments and cures is like throwing darts blind folded. Once we have a full working model, which to date rodent models have not carried over well to human primates, we should be able to explore all kinds of various avenues of treatment.

      Yes - hearing regeneration fits a portion of his theory and model of what is happening, but what if that fails? Attempts to discredit his work makes no sense to me. It seems so many seem to know so much more than he does...
       
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    7. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      High-frequency hearing loss
      I beg your pardon, but you don't know that. Prof Rauschecker's research results may take him in any number of different directions.

      Tinnitus needs more good quality research, not less. My impression is that researchers have been throwing everything at tinnitus to see what sticks. Perhaps they need to understand more about the mechanisms that generate it so a targeted therapy can be developed. Tinnitus is a neurological condition so the field needs more neurological research so that commonalities will emerge and which will lead to an understanding of the mechanism. If a target receptor is identified, a molecule could be designed to bind to it and initiate an effect. It's possible that it could even be made specific for the receptor. Pharmacology is all about receptors. Thanos Tzounopoulos is on a similar path. This is the stuff big pharma used to do.
      I agree. So again, thank you to those who contributed to Prof Rauschecker's research, the entire $1,000 gift was matched. To those of you who did not give, it's my hope that you are giving elsewhere to tinnitus research and/or in some way doing your part for the cause.
      ATA has announced that ATA and BTA are partnering up. This could be a good thing given BTA has much more experience than ATA. And, the fact that Neuromod is underwriting a dinner where researchers will be present along with ATA and BTA shows that industry can help. Those who purchased a Lenire are, in an indirect way, helping the cause.

      TC
       
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    8. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Yea, I saw that. Let’s hope it bears some fruit.
       
    9. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Absurd analogy.
       
    10. Watasha
      No Mood

      Watasha Member Podcast Patron Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      No more absurd than your black and white absolute thinking.
       
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    11. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Yeah, we'll see.
       
    12. Badger19

      Badger19 Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Unknown
      Pharma is only able to raise big bucks when they have a product that shows promise. But you have to find something first.

      If I'm informed correctly, Frequency's therapy is based off research at Stanford. This fundamental research is so very important and extremely underfunded.
       
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