BTA Are Launching a Funding Drive Towards a Cure

Discussion in 'Awareness & Fundraising' started by Ed209, Aug 6, 2019.

    1. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Well done BTA!

      I think our Daniel Ballinger Memorial Fund opened the door to this amazing way to raise money for tinnitus research as well as open eyes to all the amazing work the BTA do.

      Tinnitus Talk/Tinnitus Hub do amazing work and the sky's the limit when everyone in the tinnitus community is working together... One day we will get a cure or a way to reduce tinnitus!

      love glynis
       
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    2. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
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      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @David

      ATA have had a cure map for many years, yet given the gaps in tinnitus research listed in BTA's recent publication, it would seem to be a rather ineffective tool. Can you please comment?

      Thanks, TC
       
    3. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
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      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      McFerran/BTA touch on this in their paper - on p<vd 8 Tinnitus Pathology. Seems there are multiple theories about the underlying cause. Most of them consider tinnitus to be triggered in the peripheral or central auditory pathways or even outside of the classical hearing pathway. (Well, that really narrows it down :() Most theories also agree that the processes that cause tinnitus to persist occur in the brain. (Well, that's been known since the 1990s.) And, the proposed mechanisms occurring in the brain that are responsible for chronic tinnitus seem to be many and are based on work done in animals and with computer modeling so they come with limitations. (So, no favorite has emerged.) According to the authors, the actual mechanism occurring in humans is less clear and there is no way to determine the pathophysiology in an individual patient. :arghh:

      BTA have been working on this paper for the better part of a year. They will be putting calls out for research projects and I imagine those calls will be pretty specific. There is just no way they could have spent the time to pull this paper together and not have an idea of what can be realistically accomplished given the amount of money they have. Their journal article concludes that "several building blocks need putting in place, including biomarkers, robust outcome measures, and meaningful subtyping of clinical phenotypes." So look for BTA to put out research calls in those areas.

      TC
       
    4. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Doubt.
       
    5. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

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      Cause of Tinnitus:
      high frequency hearing loss
      Explain.
       
    6. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
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      May 1st 2018
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      Aspirin Toxicity/Possibly Noise
      My opinion is that tinnitus in most noise induced cases originates in the dorsal cochlear nucleus because of dysfunction in the spiral ganglion neurons. Not the brain.
       
    7. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
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      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      John, the term 'brain' is very general. The brain consists of the cerebrum, cerebellum and the brainstem. The structures you mention are located in the brainstem and are therefore in the brain. When the brainstem exits the skull thru the foramen magnum it becomes the spinal cord. You probably learned that if you took anatomy in college.

      You mention noise induced tinnitus. There may be other types of tinnitus, based on other causes (i.e. damage to other parts of the brain) which is why it is said to be heterogeneous.
       
    8. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I always took "in the brain" in these discussions as referring to the auditory cortex. I not only took anatomy, I minored in pre-med and had to basically juggle cadavers' organs and jump rope with intestines while naming their parts.
       
    9. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I agree that some say brain and really mean cerebral cortex, so it depends on who is having the discussion. Among members of Tinnitus Talk I sense that some will mean cortex when they say brain and others may not, depending on their background. So it may be better not to make assumptions but to ask for clarification or set the meaning before starting the discussion. I think you can safely assume that if Susan Shore or Josef Rauschecker and others like them say 'brain' they are not just referring to the cerebral cortex.

      With your background, you'll recall that receptors convert information they receive into an electrical signal. In the case of hearing, the hair cells are the receptor and when they bend, that starts off a change in the cell membrane -> sodium (sometimes another ion depending on location) rushes into the cell, the resting cell membrane potential becomes less negative and if the change reaches a threshold an action potential will be generated. The action potential in the receptor will be transferred via a synapse to cranial nerve VIII and current will travel along its axon until it reaches VIII's terminal end in the cochlear nucleus. There it will synapse with another neuron, that's considered to be the first synapse in the path. Then the signal is then going to travel along other neurons and synapse a few more times as it travels thru the midbrain, the thalamus (the relay station) and finally to the auditory cortex. Look up the hearing or auditory pathway to refresh your memory. I'd have to do that to give the exact locations of the synapses.

      In tinnitus, the damage can occur anywhere along the auditory pathway and some are saying the damage can even occur outside of the auditory pathway.

      Studying the correct brain is important. That is why Josef Rauschecker is saying non human primates are needed because they are more like humans and have the higher brain centers that guinea pigs and other rodents do not have.
       
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    10. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Potassium. I'm pretty sure the ion channels on all nerves are sodium/potassium.
       
    11. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Right. Sodium is the most abundant extracellular ion and potassium the most abundant intracellularly. In the resting state, the ion gradients set up the resting membrane potential, which if I'm recalling correctly is -40 mV for excitable tissue like neurons, can't remember about muscle, it's been awhile.
       
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    12. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      To keep complexity simple, without complex wording, there's no simple explanation of what may be causing tinnitus influence. Some have hearing loss caused from whatever. Some have initial physical trauma input that can definitely involve both the ears and brain.

      For example, those who have jaw or neck problems could have any of thousands of different interactions and they are often not only within the oral cavity, but also elsewhere. So not all will have the same flow charting. One problem can cause or lead to other problems and this is why tinnitus is unmappable as generalization - just as we all have different looks.

      There are millions of physical condition research articles on the internet where there's some attempt to explain any individual possible tinnitus associations. If one is lucky as to those with physical tinnitus, or within part, the right tests may/might show at least some of one's problems. Some problems can be fixed and others can't of at least 360,000 estimated possible associations to tinnitus.

      Most physical associations that could involve tinnitus have been discovered, but healthcare is not up to norm with proper testing to discover, so they may not use the right proper treatments even if they are known. Individual flow charting is needed that's time consuming and it often takes a brilliant team of doctors just to make an attempt in giving treatment.
       
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    13. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      One thing I find is if I have a good sleep I cope better during the day.

      If I wake up from a busy dream my ears blast away and know I need get my hearing aids in asap to cope...

      Tinnitus has many sub-categories and in time I think a cure for some of them will be found.

      love glynis
       
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    14. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Would love to know what people think about this video... Personally, I didn't appreciate them seemingly implying that everyone can learn to live a "fantastic life" with tinnitus. Mindfulness isn't good enough for everyone and implying that everyone can bring down tinnitus to a bearable level ignores that there are severe cases. Can't we support and encourage each other without downplaying this condition?
      Where does the cure for tinnitus lie?


      I preferred this video a lot more
      Will there ever be a cure for tinnitus?
       
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    15. Phendran
      Benevolent

      Phendran Member

      Location:
      Sweden
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Unknown
      I think you are right.

      Living a "fantastic" life seems to be something they say to give some hope to other people. Severe cases are very often neglected and in the end, it's what the cures will truly be for. Saving people's lives.

      At least they did seem like they think a cure is the right thing eventually, and that there is work going on towards it.
       
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    16. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      The absolute next question that needs to be answered is whether or not FX-322 had an effect on tinnitus and if non of the trial participants had tinnitus, then they need to test it out on tinnitus patients like tomorrow, not in 4 years. It has passed the safety studies. There is no good reason not to answer this question immediately. It would be very helpful to the entire world of tinnitus research.
       
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    17. Phendran
      Benevolent

      Phendran Member

      Location:
      Sweden
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Unknown
      Are there any channels we can use to tell them this?

      I should think having a proper answer will put them in a good light.
       
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    18. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      They already know this is an issue. They are just doing their little dance and nobody with enough authority in either the government or that company is speaking up and going, "we need to find out if this treats tinnitus ASAP because millions of people and thousands of vets are struggling to exist." I honestly don't see one good reason why they can't get a tinnitus group together and start testing this like now considering the urgent need.
       
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    19. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
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      high frequency hearing loss
      I watched and listened to them.

      Words like this come to mind-

      Fluff
      Non-information
      Old news
      Non-comital
      Airy
      Facebook mentality
      Waste of my time

      Plus, I've always wondered what ATA do all day. Now for the first time I see and hear from the CEO who says that they've changed their mission statement from finding a cure to finding cures. Wow, that's really deep, it must have been very time consuming to come up with that.

      And, it's just another noise? Really? My brain is making noise and that's just another noise? So you're saying its not important?? The brain is not important??? Let's get serious people!
       
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    20. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
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      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Apparently not, @Autumnly. I''m not even sure I understand why a psychologist would even be asked "Where does the cure for tinnitus lie?" It's extremely obvious that the cure does not lie within psychology. Then again, maybe as an American, I'm misunderstanding the question.

      And seeing Tinnitus Hub attached to these videos leads me to wonder whether Tinnitus Hub/Talk has taken a wrong turn and is no longer the voice of the patient.

      Time will tell, I suppose.

      TC
       
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    21. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      I’ve been volunteering for them and they don’t come across as pro-habituation pushers at all. They want to see more research, medical treatments and ideally a cure but there’s only so much you can do when everything Tinnitus Talk does is based on volunteer work. They also make it clear that tinnitus can be debilitating (e.g. on Twitter), in my opinion. Hazel traveled to Taipei for the TRI, they interviewed Gaby’s mom, they've created a Podcast series and mostly focus on interviewing researchers, they're running a blog, they're in the process of creating different video series for free and a lot more!

      But it's great to see the BTA talk more about the need for a cure on twitter. :)

      Also, I saw this on Twitter:
      Bildschirmfoto 2019-09-03 um 19.26.44.png
       
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    22. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Why aren't they reaching out to Regain or Frequency Therapeutics in order to find out if their trials showed an effect on tinnitus? That to me is the absolute #1 priority.
       
    23. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I'm pretty sure we've approached REGAIN, but I know for a fact we've approached Frequency Therapeutics a couple of times, even asked them to take part in the podcast.

      You get stuck with a PR rep and it doesn't get you anywhere. I wouldn't be surprised if Frequency's priorities are on the clinical trials and such. Communicating with a relatively small online community isn't probably their biggest concern at the moment.

      Feel free to try yourself, maybe you have better luck. :)
       
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    24. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      There is a long story behind this, which I would be happy to tell you about in more detail. But in short we helped them record interviews, i.e. make practical arrangements, solicit questions from the forum, and conduct the interviews. The deal was that we each get to use the footage as we see fit and each create our own videos for our own audience; in other words, we were not involved in the selection and editing of these videos at all, but are given credit for our help in making the recordings, which we appreciate. We had planned to release our own video series based on this footage, but for various reasons never got around to it.

      It doesn't surprise me being the target once again of unfounded insinuations. But it DOES surprise me coming from you. "No longer the voice of the patient" - are you kidding me? If that's what you really think it makes me feel like all those thousands of hours of free time I've put into this are all for nothing and we might as well give up :(

      Thanks @Autumnly for your support.

      Personally, I agree the psychology stuff in the videos is not that great, but the rest is still informative. It might be old news to those of us following research news intently, but most tinnitus patients don't. I also just read the article co-authored by BTA on why there isn't a cure yet, and thought it was pretty informative. I will create a separate thread on that, and was thinking of maybe a dedicated podcast episode on this topic.
       
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    25. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      "Why aren't you doing this? Why aren't you doing that?"

      I see you're still up to your old tricks, John. Balance in the universe is restored.

      It would be nice, maybe, just as a suggestion for the next time you feel an urge to tell us what to do, if you could formulate it as a question, i.e. "Have you ever reached out to xxx?" I guarantee you 9 times out of 10 the answer will be yes, we have tried in some shape or form.

      As @Markku rightly suggested, there is nothing standing in your way from trying yourself.
       
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    26. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Tricks? lol what?
       
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    27. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I was directing my use of the word "they" at the BTA, not you guys. Sorry for any confusion.

      I have in fact reached out to certain individuals and gotten more than a boiler plate response but I know that if I ask a straight up question about their trial data I will get nowhere so I haven't asked. Don't get me wrong, I don't for one second think that you or Hazel aren't doing enough nor do I think you'd have much better luck than me reaching out to these companies.

      The BTA however, I think they would have much better luck, and I'm not saying you are a part of them.
       
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    28. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Yeah. I've had luck before with reaching out to CEOs directly when other means fail, but not in this case.

      Seeing the Frequency Therapeutics thread is also one of our most-viewed ones, it would be great to have a dialogue with them when they're ready to do so. Ideally I'd want to solicit questions from the community and have Frequency Therapeutics answer as much as they can. If their time is limited, it could even be a text Q&A (like we did with Auris Medical back in the day). Really anything would be appreciated.

      But I agree there's only so much they would want to answer at this point in time... Well, at least the September event is not that far off now.
       
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    29. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I have a feeling that they have such a huge money maker on their hands that they are going to play their PR as sterile as possible. That's why I haven't asked them about tinnitus. I am 100% sure that they aren't neglecting the question of tinnitus either. They would become a major pharmaceutical giant overnight if their drug could cure hearing loss and (some forms of) tinnitus. The thing that just kills me though is that the quest for money supersedes the quest for truth and understanding. It drives me absolutely bonkers.
       
    30. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      The BTA article on why there isn't a cure yet has some good points, and what causes tinnitus is different for most.

      I think that this sentence within the BTA article says a lot. "Globally there are very few research centers where cross-specialty expertise is available to cover and integrate this huge breadth of research topics." It would take more than a Google data processing center to design flow charts for all possible tinnitus physical association input.

      Tens of thousands of articles on physical tinnitus are on the internet. One problem can relate to another problem and that problem to another and that problem to something else.

      Most physical causes of tinnitus have been discovered, but to flow chart physical tinnitus and the possible physical inputs/connections is impossible. There are more crossing wires, (conditions - biology) connecting wires and spilt wires and circuits than in all technology.

      I guess I sort of repeated some of what I posted in a forgotten post above.
       
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