A Tinnitus Petition Lobbying Governments

Discussion in 'Awareness & Fundraising' started by Ed209, Nov 6, 2018.

    1. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
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    2. Deamon22

      Deamon22 Member Benefactor Ambassador

      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma/Cold?
      Thanks @Ed209 for sharing it. Signed and donated a small amount.
       
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    3. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      Signed.
       
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    4. Leoglobe
      Curious

      Leoglobe Member

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      acoustic trauma
      Signed.
       
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    5. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Done.
       
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    6. Teddy Westside

      Teddy Westside Member

      Location:
      USA
      Tinnitus Since:
      01/2011, Recent Spike 08/2018
      Cause of Tinnitus:
      Earwax Removal (Onset), Noise/Ototoxicity (Spike)
      Signed and donated. Let's keep it up!
       
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    7. Ecip

      Ecip Member

      Location:
      Edmonton, AB/Switzerland
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      Ugh.....
       
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    8. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      Didn't make me sign in.
      Signed.
       
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    9. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Signed and donated a little some.

      Lately I was thinking that we need to start a petition. Glad to see somebody already has, and I hope it gets many signatures.

      Shared it on Facebook too.
       
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    10. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Signed.
       
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    11. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      I'm not a fan of Change.org, they spam your e-mail with other petition requests.

      Why are they asking for money when signing the petition? Where does the money go? @Ed209
       
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    12. PDodge
      Cowboy

      PDodge Member Benefactor

      Location:
      Woods of Alberta
      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Bear ate my Cochlea
      Signed!
       
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    13. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      The money goes to keeping the Change.org platform going. I didn’t donate this time but have in the past on other causes.

      Just set up a throw away email for purposes such as this. To be honest, I never noticed any mail activity from them, so either I ticked a box to say I didn’t want it, or my email is spam filtering it.
       
    14. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I didn’t have to log in, and I’m pretty sure I already have an account with Change.org from other petitions.
       
    15. Manny
      Sad

      Manny Member Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
      Signed and donated.

      I think the money goes to change.org for profit.

      You're basically paying to advertise our petition to be shown to change.org members who are potential signers.

      I think.

      @annV
       
    16. Manny
      Sad

      Manny Member Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
      @Amit Shah it's awesome how clearly you stated that research is needed for genuine cures! i.e. regeneration, also bimodal stimulation. Thank you!!

      How can we get this over to veterans groups/org's?
       
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    17. Manny
      Sad

      Manny Member Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
      Thread bump
       
    18. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I shared it with a tinnitus Facebook group. Not sure if that helped.

      @Ed209 wasn’t there another petition done some time ago targeting the Dutch government? Any news on that?
       
    19. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
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    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Last edited by a moderator: Dec 3, 2018
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    21. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      "And yet, at the same time, we need to have 21st century techniques and therapeutics to tackle this menace. We don’t simply use mathematical data analysis of the effects of stress, sound therapy, etc to show that these are beneficial and pass that off as quality tinnitus research. This kind of research has no THERAPEUTIC value and is a vestige of 80s and 90s era research. We should encourage some quality therapeutics based research using 21st century techniques i.e. cochlear hair cell regeneration, acoustic neuromodulation, rTMS which can actually help to alleviate this condition rather than just encourage acceptance."

      Wow @Ed209 actually promoted something that itself promotes cochlear hair cell regeneration! Has Hell frozen over?

      I didn't even bold that line it is bold on the page.
       
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    22. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Exactly, John. I’m surprised you’ve only just read it. Have you signed it yet?

      I’ve never been against it. I’m pro-research and pro-cure and always have been.
       
    23. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Can I lobby the UK government? I'm in America.
       
    24. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015

      It targets all of these people:


      EC13D7FD-6899-4CE1-ADB6-CEDE71377660.jpeg
      4C27F749-B8E9-41FD-9D42-7367672EEC9E.jpeg
      5DACBB5B-B106-4212-BCD5-68CDFCC302DD.jpeg
       
    25. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
    26. Striveon

      Striveon Member

      Tinnitus Since:
      08/2018
      Cause of Tinnitus:
      Unknown
    27. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Signed.
       
    28. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
    29. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      One thing about this petition: it is calling for funding for research into cochlear hair cell regeneration.

      Well. I'm pretty sure that Frequency Therapeutics CEO David Lucchino said in an interview that not only are they patenting the drugs to do this but also the pathway signalling methods used to do it. If pathway signalling is the only way this can be achieved then that precludes anyone else from doing it. They don't want donations or public investment right now either.

      There is a lot of awesome information about this technology posted by myself and others on the Frequency Therapeutics thread including a very interesting economic breakdown recently posted by @Enclave but it all just keeps getting bumped back to back pages by someone that constantly writes extremely long posts defending the FDA process and nay saying all speculation that FX-322 may cure tinnitus.
       
    30. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      There is a monumental difference between defending the FDA and stating some facts about the approval process. I have no opinion on the FDA whatsoever.

      However, I can see this is bothering you so I’ll stop posting there.
       

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