Letters to Congress

Discussion in 'Awareness & Fundraising' started by dochoppy, Oct 20, 2014.

tinnitus forum
    1. dochoppy
      No Mood

      dochoppy Member Benefactor

      Location:
      United States
      Tinnitus Since:
      3/2010
      Cause of Tinnitus:
      Noise exposure, drug combo?
      Not sure where to post this, but I was just wondering if anyone has ever written letters to congressman/senators?
       
    2. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      yes I wrote to the president, not sure if he ever read them (VERY DOUBTFUL) never heard back. it was on computer so I wrote.
       
    3. Relic Hunter
      Cynical

      Relic Hunter Member Benefactor

      Tinnitus Since:
      01/1990
      Congress doesn't give a damn. They are too busy running for re election and the President I am sure is out playing golf somewhere.
       
    4. SoulStation
      No Mood

      SoulStation Member Ambassador Team Tech

      Location:
      New York
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Noise / Possible Medication
      I wish one of the plethora of famous musicians would speak up on T . I know some have but not before congress. If Seth Rogan can go before our government and stand and talk to them then Bono can find the time. I know that many of them probably don't suffer from T as much as they just have it.
       
    5. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      The only famous person to ever speak out about T was William Shatner and he was promoting TRT with Dr.Jastreboff. (i.e.Jastreboff saved his life ...there is hope ...etc)
      Seems to me Shatner loves promoting products, just look for his commercials on TV.
       
    6. SoulStation
      No Mood

      SoulStation Member Ambassador Team Tech

      Location:
      New York
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Noise / Possible Medication
      Yeah I heard he (Shatner) did that. Ugh. Does Jastreboff have T? I feel a bit stupid that I don't know that.
       
    7. dochoppy
      No Mood

      dochoppy Member Benefactor

      Location:
      United States
      Tinnitus Since:
      3/2010
      Cause of Tinnitus:
      Noise exposure, drug combo?
      I am a veteran and a physician as well, I am thinking about writing letters to my reps in congress on the state and national level. I would love to get some FaceTime with one of them.
       
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    8. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013
      @dan, other celebrities have spoken out about hearing protection and T. Hear the World has a huge number of celebrity ambassadors. Not all have tinnitus, but KT Tunstall does and speaks about how she got it from a concert she attended. http://www.hear-the-world.com/en/ab...erviews-with-our-ambassadors/kt-tunstall.html

      Admittedly, more who have tinnitus could say something about it, but it's not just Shatner.
       
    9. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      As with any lobbying, you have to ask yourself - in advance - what is it that you want to achieve and how to do you want to achieve it? Suppose you write a letter to Congress and - by some miracle - they grant you $10 million on the spot, what exactly would you do with it, and how exactly would it advance existing tinnitus research? At the very moment, already a ½-billion dollars has been invested in the +10 otology pharmas currently pursuing research in cochlear pathologies (tinnitus, MD, and hearing loss). Handing the top three pharmas (AM, AUT, OTO) a 3.3 million dollar cheque - each - will not change a damn thing (they already have the funding they need). And 10 million dollars in a new research initiative will not change anything either (in my opinion): first of all, it would not get you very far, and secondly it is better to rely on the research that has already been initiated. For sure, funding (and research), could have a made a difference some ten years ago. But not now.

      So what can you do? In my opinion, the whole deal needs to be approached differently. Instead of hoping for grants in favour of new research, why not revisit the concept of fast tracking the current research developments? At the moment fast tracks are only granted for pharmas pursuing drugs "which show promise in treating a serious or life-threatening disease and address an unmet medical need". Tinnitus wouldn't qualify. But perhaps - with the right lobbying - that definition could be changed or granted an exemption. Especially if the right people in government are made aware of the more than one billion dollar "price tag" for annual tinnitus disabilities of veterans.

      But lobbying is often about knowing the right people. Sometimes to get things done, you need to apply an "indirect approach". Former President George Bush is very much involved in supporting disabled veterans (he does the famous bike rides for veterans as is well known to many). Reaching out to very senior ranking people such as former presidents would be difficult for sure. But sometimes a "middle-man" - who may be "attainable" - can be used - eg: the now relatively well-known former officer Melissa Stockwell (who - as far as I know - has come to know the ex-president quite well):

      BUSHRIDE2.jpg

      There is also the following individual (US Navy) who might have connections (or insights):

      A Veteran describes his experience and life...


      I will myself be doing what I call "smart lobbying" at some point in the foreseeable future. The above is just examples of how to possibly approach the situation in order to gain access to the right people as a means to bring attention to your cause. There are many roads that lead to Rome. But first you need to define where/what Rome is (ie. new research, fast track exemption, etc.).

      I should also mention that sometimes there are people in this world who may not want to see you succeed. Example: if you have a pharmaceutical company developing a cure for hearing loss, how likely do you think it will be that it will have the blessing of the hearing aid companies? Something to think about.
       
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    10. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013
      I completely agree regarding your approach @attheedgeofscience. I'm glad you're looking into this sort of lobbying, it's a place that solid research, good planning and critical thinking are not only beneficial but necessary.
       

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