Amazing — I'm Told People Don't Want to Give Towards Tinnitus Research

Discussion in 'Awareness & Fundraising' started by Allan1967, Oct 25, 2018.

    1. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      It's been quite a while since I have had any correspondence with... well... anyone in the research field. My last exchange with the Pittsburgh community (both pharma/uni) was at the beginning of this year (see thread concerning SciFluor).

      Status (old) that I know of is:
      • SciFluor continues to be interested in tinnitus (and is moving ahead with another molecule in place of SF0034 as far as I know).
      • Towards the end of 2016, the folks behind RL-81 were still looking for a pharma entity to sponsor further preclinical studies (in order to take the various molecules through toxicology testing (preclinical) – I think). At least, they were in talks with four specific pharma entities (I am aware of which ones too).
      • Also continue to have an eye on Autifony Therapeutics (despite the AUT00063 failure).
      The Kv-channel field is not at all busy (and also highly underfunded – which might be an indication that it is not worthwhile). So... basically this needs to sort itself out – meaning: leave as is, and revisit in five years time. Lastly, keep an eye also on Knopp Biosciences.

      That's more or less what I know.
       
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    2. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      What are your thoughts on Susan Shore/University of Michigan bimodulation and MuteButton? Are they yet another ACRN or something better?
       
    3. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Definitely keep an eye on this.

      ACRN may hold more promise than we think (know). It's all a matter of having the resources to do studies. And even then, the (in)ability to define proper patient profiles may be the culprit in proving efficacy.
       
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    4. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

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

      Would you know if there is a patent on RL-81? Or is there prior art, which could be making this part of the difficulty with getting pharma interested enough to sponsor additional studies?

      TC
       
      • Good Question Good Question x 1
    5. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Allan1967, @Ed209, @Samantha R, @Starthrower,

      I went on Tinnitus Hub Facebook this morning. I only go there once in a while, but saw that Allan has managed to generate some interest in donating! Once he posts the list, it's likely I will donate.

      Right now, I am undecided about the ATA. I don't appreciate the fact that their message seems to be around those whose tinnitus fades away. If by that they mean someone going to a concert or fireworks and experiences a slight ringing which fades away in a matter of hours or days, then indeed those people need to be educated.

      However, shouldn't it be GPs, ENTs and audiologists in general that are putting the message out to the general public? There are 4 professional societies for audiologists in the US, surely one of them can take up the cause for educating the general public including those working or playing around loud noise. If you've experienced ringing that's faded, it's a warning sign (but it's not chronic tinnitus) and you better see your Audiologist who can educate you to take proper precautions for your situation to protect your hearing.

      Given it's those with chronic tinnitus that seek out assistance from the ATA, it should be chronic sufferers that are their main concern. And, 100% of ATA's efforts should go towards the chronic sufferer. This may challenge their thinking, but hearing health in general has been ignored, it's the final frontier as they say. And GPs, Audiologists and ENTs need to get their acts together and promote a prevention message. That may include getting your hearing checked periodically, the same way you have a dental checkup, eye exam or an annual physical exam. So the GP needs to be the one reminding and referring.

      Does this make sense to you? Do you agree? Does it apply to the UK as well? Can the argument be made more compelling?

      As far as BTA goes, right now they only fund research in the UK and have in the past supported studies for CBT and mindfulness. That may have been necessary to get on the NHS, but I'm an American and it does me no good. That's not a complaint, they are, after all, the British Tinnitus Association. However, they have said they will begin fundraising for a cure in the spring and I may contribute to that effort. It depends on the scope of the program.

      Thanks, TC
       
      • Agree Agree x 1
    6. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I have not renewed my ATA membership, as I didn't feel like they were making great use of my $$.
       
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    7. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      @TuxedoCat,

      I couldn't find the post on Tinnitus Hub Facebook, but I'm thinking it may have been in the "Closed" group which I'm not a member of.

      As for the ATA, I certainly don't like the rhetoric around tinnitus fading for the majority. Based on this, I wouldn't donate to them as they are not representing me - a chronic tinnitus patient.

      I absolutely agree that more awareness is needed, but I'm not sure that doctors or audiologists in some cases understand how severe tinnitus can actually be.

      Certainly they should be on the front line and providing education to patients, how do we get them on board is another issue altogether.

      I can honestly tell you I had little to no idea about hearing protection prior to tinnitus. It astounds me now that I didn't, but I didn't.

      It's something a lot of people take for granted, and I never thought that the ringing in my ears after a nightclub visit could ever be permanent.

      I'm in Australia, and we have nothing, absolutely no tinnitus organisations (except a couple of websites and a helpline you can ring (but are told to limit the call to 10 minutes) - that are run by volunteers).

      I'm probably more driven to make a difference to chronic sufferers in terms of fundraising for a treatment or cure, but certainly appreciate the need for awareness.

      Sam.
       
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    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      It's Giving Tuesday in the US. I'm heading over to donate to BTA, then onto the Professor Rauschecker thread to do the same.

      Have You Donated?
      TC
       
      • Winner Winner x 1

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