Americans: Should We Contact Our Local Congressmen About Funding for Tinnitus?
- Thread starter JasonP
- Start date
MemberI 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.
Yeah, that is a great point. I went ahead and contacted my state's senators, but I think your idea is way better.
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.
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.
ruben ruiz
Member
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.
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!
Nobody would do it, or they would do it for 30 seconds max then take the headphones off.
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.
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.
Nobody would do it, or they would do it for 30 seconds max then take the headphones off.
Exactly the point: Endure or donate!!!!
If you can't do it you need to donate money!
Simple!
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.
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!
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
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!
FounderWhile 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 and I are always on the lookout.
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.
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.
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.
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!
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.
- Aug 14, 2013
- 2,456
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Nobody listened? Well, that's a modification of the truth if ever I saw one...
www.tinnitustalk.com/threads/sf0034-%E2%80%94-e-mails-to-the-white-house.12361/page-2#post-152604
Dubbyaman
Member
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
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.
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.
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