Stop Giving Money to the British Tinnitus Association

Discussion in 'Awareness & Fundraising' started by Gl0w0ut, Apr 10, 2019.

    1. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Why aren't you pushing for us to demand accelerated access to stuff like BDNF injections and hair cell regenerating substances?
       
    2. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi @david c,

      Oh no, I didn't read it as a demand, so no worries!

      I genuinely mean that I would love to look at the case of ME sufferers and what they have been up against, as a learning tool.

      For example, how do they go about raising awareness about ME amongst physicians and others. Has it been successful?

      When and how have they engaged with policy makers. Specifically, what did they say that resonated and what did not.

      Also, ME sufferers are misunderstood. Like tinnitus, there are no outward signs of ME. People tend to think ME sufferers are just lazy. How do ME sufferers handle those perceptions? Have they been able to change them? How?

      I think there is more than one ME charity in England. Why? What are the similarities and differences among them?

      Have ME sufferers been able to get an increase in funding for research? How did they do that- i.e. what strategies did they employ?

      I could probably generate more questions, but actually that would be the first step of the exploration which I really can't devote any time towards until we finish up the Treatment Reviews.

      Anyway, I hope that helps clarify. As far as BTA goes, they have strengths and weaknesses. I would certainly bristle at any organization's attempts to move me into some category so they can say they've created a world where nobody suffers from tinnitus. The suffering will stop when an effective treatment or cure is found.

      TC
       
    3. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @JohnAdams, why aren't you doing this?
       
    4. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Uh, I don't. I'm pretty sure 90% of my posts are about this. I have a Twitter account that I user to exclusively do this. There's only so much one man can do without help, or influence, or money.
       
    5. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Well you must have some sense of where a demand for accelerated access to stuff like BDNF injections and hair cell regenerating substances should be placed. Would it be Congress, FDA, NIH?

      And you must have some sense of the argument you would make to justify the demand. Look up the way AIDS treatments were fast tracked, can you model tinnitus based on that?

      Talk to your Congressman or woman. Put a petition together.

      Do something other than go around demanding others do it for you.

      We are all in the same boat - one man/woman, without help, influence or money.

      If you put a petition together, I would sign it. If you collected signatures on a letter to your congressman I would sign it if it would help even though I'm not a resident of Tennessee.

      TC
       
      • Agree Agree x 4

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