Americans: Should We Contact Our Local Congressmen About Funding for Tinnitus?

Discussion in 'Awareness & Fundraising' started by JasonP, Jul 29, 2016.

tinnitus forum
    1. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      A lot of congressmen care about the veterans in America and tinnitus is their number one disability. Do you think it would be a good idea to see if they will set aside money to fund tinnitus research?
       
      • Good Question Good Question x 1
    2. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I think it's a reasonable idea, but I expect it to be a very slow, last-century, last-millennium actually, process.
      Nowadays, if you want fast awareness & $$, you need to leverage social networking tools. Case in point: the ALS Ice Bucket Challenge from 2014. Raised over $220M. Already gotten results from their funding.
      We need something like that, to raise awareness, as well as $$.

      Nothing wrong with going for the old fashion way too, if that's what you feel comfortable with. I don't think it can hurt.
       
      • Winner Winner x 1
    3. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Yeah, that is a great point. I went ahead and contacted my state's senators, but I think your idea is way better.
       
      • Winner Winner x 1
    4. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      Ok I'm from South Florida, Miami and Palm Beach area, my name is Robert (954-638-1757) , we can get together and go to the congress office and let them know how we suffering, tinnitus is not a game, people commit suicide every day because of this horrendous condition, I have 2 beautiful kids and family, tinnitus and hyperacusis ruining my life, we have to make some noise or never get the real treatment, professor Thanos told me SF0063 and RL-84 is in SciFluor lab, no trial in 2 years because of the government and money, please let's do something, 50 years is enough.
       
      • Agree Agree x 2
      • Helpful Helpful x 1
    5. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I certainly don't want to discourage you from doing this, but I'm afraid that type of isolated action isn't going to make a difference.
      We need to think about an operation that scales way beyond our own individual reach. I only know of viable options in social media or TV, which is why I keep bringing up the example of the ALS Ice Bucket Challenge as well as telethons.
       
      • Agree Agree x 1
    6. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      What ever worked out, but let's do this now.
       
      • Agree Agree x 3
    7. ruben ruiz

      ruben ruiz Member

      Location:
      Tucson, AZ
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      I believe it was meds and stress
      I wrote a letter to vice-president Biden he on the committee that deals with the FDA. A representative called me the next day. He asked me how I was. I spoke about the needs of the 20,000.000 chronic sufferers and the 50,000.000 potential sufferers. I spoke out that there is not even relief that isnt ototoxic. Or the crucial need for a solid cure. I said currently all the otoxic sleep and relief meds available were making the people even sicker, more tinnitus and hearing loss. He answered that they knew that this illness was a catastrophe in the making. He said they were fast tracking potential meds. The conversation went on. Write to them, you know the ones to right too.
       
      • Like Like x 3
    8. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Get headphones with horrible t sound and start challenging people to wear them for x amount of time!

      Or organise a group suicide so somebody will have to pay attention!
       
    9. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Nobody would do it, or they would do it for 30 seconds max then take the headphones off. :(
       
    10. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      Last year I tried to do something and nobody listened to me. If everyone in this forum would start sending e-mails to the White House, and tell them how we are suffering and there are people like professor Thanos who want to help us. He told me last week the SciFluor lab have SF0063 and RL-84, no clinical trial in 2 years because of not having money, when they start receiving 1000 e-mails every day, maybe they do something.
       
      • Agree Agree x 1
    11. Lorac

      Lorac Member Benefactor

      Location:
      Michigan
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Sudden profound hearing loss in left ear.
      Need more awareness of increasing noise levels in the world also. My own problems were not likely caused by noise but so many young people here suffer because of loud headphones, clubs, concerts, etc. They did not even know they were in danger from the exposure.
       
    12. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Exactly the point: Endure or donate!!!!
      If you can't do it you need to donate money!
      Simple!
       
    13. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I wish it was that simple. This experiment would not represent the same anxiety that a T sufferer goes through, not even close. Not even 3 orders of magnitude smaller. The reason? They know they can get away from the stimulus anytime they want: it's not a threat.
      We T sufferers are anxious because we have no end in sight. If we were told it will go away in 1 day, week, month or year, we'd be feeling much much better and have a much higher tolerance to our condition.
       
      • Agree Agree x 4
    14. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      People pouring water over their heads also don't know the distress of the disease they did it for.
      No need to be too technical!
      The main thing is to raise money and more awareness.
      Yes unfortunateky for us we can't donate and be free of the noise.

      Other ideas are welcomed too!
       
      • Like Like x 2
      • Agree Agree x 1
    15. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Agreed. No need to have something related to T at all.

      In fact, it will be more viral if:
      • it's safe
      • it can be done pretty much anywhere by anyone (as few dependencies as possible)
      • it has entertainment value
      The ALS ice bucket challenge was pretty good in that respect. Anyone can go do it, it's safe, and the discomfort endured shows a sense of sacrifice while providing some entertainment value.
       
    16. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      See I personally don't think pouring ice cold water over your head is safe.
      Second being wet and changing clothes would piss me of too.
      But that's me.
      Headphones on the other hand can be used anywhere, anytime, workplace, sport events.
      What I would like to see is people from media for example trying to read the news with noise.
      Or a surgeon doing surgery.... Possibilities are endless!
      It just needs to be thought through but I see no other way to rise more awareness.
      Fun part could be the challenge itself, almost asking for some bravery to do it.
      And lot of young people would probably try to prove they are not weak!
       
      • Winner Winner x 1
    17. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      OK, we'll agree to disagree.
       
    18. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      While you can find these attributes in the Ice Bucket Challenge, it is hardly reproducible. A number of charities have since tried making their campaigns go viral (sometimes taking cues from the IBC but with unique twists so as not to directly copy), without much success.

      Things like IBC happen once in a blue moon, and such successes often rely on a significant amount of luck, as well.

      If you read the origins of the Ice Bucket Challenge, you can see that it wasn't even created by the ALS organization to begin with, but coincidentally ended up being attributed to it when it became more famous.

      And, of course, it required some media love to properly get off the ground, to help build the critical mass that is needed in these kinds of efforts (Morning Dive, Matt Lauer, etc...)

      Nonetheless, the points you mentioned can increase the chances of something like this going viral (in my opinion).

      Finally, being afraid or passive to try (which, unfortunately, often is the case among the tinnitus sufferers; we've tackled the issue of general apathy within the community plenty of times) will certainly not yield any results.

      Do you have some actual campaign ideas? It would be interesting to hear. @Steve H and I are always on the lookout.
       
      • Agree Agree x 1
      • Informative Informative x 1
    19. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Agreed. I would have lied if I had said it's an easy task. On top of it, we wouldn't be pioneers... or would we? That depends on the type of campaign we can deliver. If it's too similar to the IBC, then it won't have as strong a drive.

      Overnight successes are typically overnight after years of hard work and failures (like Angry Birds for example).

      While I have been putting some thought into it, I don't have any suggestion that I find satisfactory at the moment. I have a couple of ideas that are OK, but that's the thing, they're "just OK". I don't think that will cut it.

      I do have an innovative idea about the driving force for the virality, but I need to crystallize it more before sharing it with a broader audience.
       
    20. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      @GregCA
      @Markku

      So all in all where do you think we stand with headphones ideas?
      Possible to realise or not really?
       
    21. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I think there is some merit to it. To me, the viral content (and "entertainment value") I can imagine with playing T sounds through headphones is the facial reaction of the "victims". In other words, I expect to see grimaces and faces of disgust, and possibly people taking out the headphones right away. The reactions may be priceless (in terms of campaign assets).

      The downside is the logistics of implementing each instance of them: you need to have headphones handy and something that will generate horrendous T sounds.

      I do also worry that it could inadvertently cause T to people who were just trying to do it for a good cause. That would be bad collateral damage!

      But it is worth digging, IMHO. It's a good idea.
       
    22. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Kudos to you for your post! Giving your info plus every word you wrote.... with people like you and others there is a chance that we will obtain the help we are entitled to. We are too silent considering the torture we are subjected to with this noise in our heads and the ignorance from the people who are supposed to help us, cause that is as part of their job description, is unacceptable. It is up to us to do something for our situation and for the others who will get tinnitus in the future and will wonder: "wow, this affliction is awful! How come the old sufferers didn't do something about it???" If for us may be too late, cause with all the extra funding research may still not be able to advance fast enough to be materialized in a treatment during our lives, we have to do something for the people who will get hit by T in the future.
       
      • Like Like x 1
      • Agree Agree x 1
    23. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      If we had only one famous person to initiate something it would be much much easier to do.
      Yes the logistics of it is a problem, unless only big groups are targeted.
      Who would have thought that pouring a bucket of f.....g water would make it that far.
      It just shows we need something fun and stupid!
       
      • Like Like x 1
    24. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I don't know about stupid, but fun definitely. There needs to be a sense of "sacrifice for the greater good" so people feel motivated to do it, and it needs to be fun to watch so it spreads virally.
       
      • Agree Agree x 1
    25. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
    26. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      William Shatner tried back in the late 90s and he's one of the biggest names in Hollywood. Not even the great captain Kirk could get a movement going. Booooooooooooooo
       
    27. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Shatner is stuck back in time when he was helped by TRT so I doubt his effort was raising awareness and funding research for cure.
      He's ATA man so nothing coming from him would portray tinnitus as a serious condition.
      Musicians such as Chris Martin or will.i.am could work a miracle.
      They have millions of followers on social media so their word would be heard.
       
      • Agree Agree x 1
    28. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Unfortunately I'm not sure they have it very bad. I saw an interview of CM where he mentioned his T, and he made it sound like it wasn't a big deal. That's not just unhelpful, it's actually counterproductive as it tells the world this condition isn't very serious.
       
      • Agree Agree x 1
    29. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I just saw today the VA spent 20 million on fine art. The VA spends over a billion a year for Tinnitus, how much of that taxpayer money actually gets donated to research?
       
    30. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      they spent 1 million on research in 2009 and 1.1 billion on disability.

      don't count on the VA.
       

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