Tinnitus Awareness/Research

[NiNyu]

"what is the goal, and how do you want to achieve it..."

Besides funding for research we are in need of acknowledgment and awareness that T is one of the worst maladies there is. People need to know that there is sanity destroying intrusive ultra loud reactive T. So that's the goal.

It seems to me that we are such an insignificant minority that no one in the world of entertainment cares. And that is not because they are ignorant or stupid, no! It is because nobody is educating them.

For instance, prior to T I did not know about this board. I did not know that there are tens of thousand that suffer greatly every single day due to T. Of course, I knew that loud music can damage your ears (thus I always wore ear protection when going to concerts etc) and about soldiers being exposed to explosions -- but that's it. No one told me that you could get it from a freaking cold, certain meds, stress, or a hit to the head. So I had almost zero awareness.

Where are the awareness campaigns?

Even celebrities have T ? Really? Where? Where is the ice bucket challenge for that? Like @robinbird suggested.

I totally agree with Dana, It is outrageous. And sad. A very sad world; of noise.

Seriously, if we fail to educate the minds of the most number of people I'm afraid we are doomed to continue suffering in the dark. Unless T really becomes a contagious and life-threatening disease.
Personally, I wish T was a life-threatening disease. Not because I'm malevolent but then at least we would get some recognition. And secondly, I would know that my suffering won't be much longer.


About the WHO (World Health Organization)

WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.

Funding

WHO is undertaking extensive reform to ensure that the Organization is well-equipped to meet the increasingly complex health challenges of the 21st century. As part of these efforts, we're working to improve the alignment, flexibility, predictability and transparency of the Organization's financing, and to reduce its vulnerability. The ultimate aim is a fully funded Programme Budget.

One more thing, I think we could use Youtube for education. Everybody is watching Youtube..

 

[Dana]

People need to know that there is sanity destroying intrusive ultra loud reactive T. So that's the goal.

That is one of the most important facts that WHO and health systems and insurance companies have to learn, and they can only learn that from people who suffer from this kind of T. And for that we have to UNITE!

Let's say I have a break from T for a while, get my previous T brain power and write the letter myself, or I pay somebody to write the petition to the WHO. And after that I sign it. What kind of echo would a petition signed by one person have? NONE!

They would think I am lying, but with the testimony of as many T sufferers that could also sign that paper, the suspicion that I am lying or exagerrating dissipates.

That's why I can't do anything by myself. Or anybody. That's why we have to UNITE!

All the disabled people united their voices into a single powerful one, and obtained results. Who will bring awareness to the organizations that are supposed to take care of ill people if not us?

The sound is in our heads only. Not even our family members belive us!

I will have to show some TT memebers's testimonies to my parents, so they stop abusing me, as they do not have a clue about the level of the sound that I have to live with in my head. My mother has a tiny T from time to time and she believes that is what I am referring to, what she has, only she can take it and didn't even bother to go to an ENT, cause it's not really a problem, and I have the same exact problem, with the same level, but I complain about it because I am a whiner.

We have to bring awareness and ask for help, UNITED. Otherwise nobody will know about us and we won't get any help. And I can't accept this to happen in a "developed society".

 

[NiNyu]

We could draft a letter as a team together. I think @attheedgeofscience is right, we don't need necessarily signatures, this board alone should provide enough credibility. The letter shoud have one section with an introduction, one with facts, and one section with 'our goal -- what we want' from them. Once we have a first draft we can consider which organizations we would like to contact.

 

[Dana]

Instead of a list of signatures, a link to the board? ATEOS said that before? Didn't notice. But in that case the board should definitely stay in place.

Usually petitions are completely on a hard copy, not with virtual annexes, that require a computer, Internet connection and a link. The petition must be on a hard copy that contains everything, so it can remain as a document forever. Instead of a reference to a link to the board, I suggest that we post the petition on the board, on a thread, with each person who reads it to post something about it, and then print that thread and send it as a hard copy to the WHO. If it contains hundreds of pages, so much better!

 

[Dana]

@NiNyu
I think the chronological order should be the opposite. Think about what organization we write the draft for, check their activity and statute, and make the draft customized to that particular organization.
I still think about WHO, as it it on the top of the hierarchy. We do not need WHO funding if they don't fund yet, if funding is an ultimate aim not reached yet, we need WHO directives to organizations that it supervises to do the funding.
@amandine Where are you? Are you OK? We need your input, as this was your idea.
Also she had the ideea to connect with the Tinnitus groups that are on Facebook, and I totally agree with it. I joined the Tinnitus groups of FB and they are very good. (I personally don't use and don't know much about Tweeter, but she said something about this social network too)
Also there are so many other forums about T.
Our problem was that we are only a few, so we can't be afraid that if we all unite we get to be too many. Let that be our only problem, that if we unite we get to be too many!

I didn't think for a second about funding from WHO.

 

[Carm]

I think the chronological order should be the opposite. Think about what organization we write the draft for, check their activity and statute, and make the draft customized to that particular organization.
I still think about WHO, as it it on the top of the hierarchy. We do not need WHO funding if they don't fund yet, if funding is an ultimate aim not reached yet, we need WHO directives to organizations that it supervises to do the funding.

WHO is already aware of the problem ( http://www.who.int/pbd/deafness/ and http://www.who.int/mediacentre/news/releases/2015/ear-care/en/ )
They know about tinitus (too). Don't you think they know how it cost treating the military people is? Who have tinitus. They know it all.

WHO is wrong organization. Send your plea to the AMERICAN TINITUS ASSOCIATION.

What are you asking for? Do you think any organization can make that difference you're hoping for? Are you realistic? There are very little people with loud tinitus and low tinitus people don't care about it. You're lucky if you get 200 signatures! good luck

 

[robinbird]

Besides funding for research we are in need of acknowledgment and awareness that T is one of the worst maladies there is. People need to know that there is sanity destroying intrusive ultra loud reactive T. So that's the goal.

It seems to me that we are such an insignificant minority that no one in the world of entertainment cares. And that is not because they are ignorant or stupid, no! It is because nobody is educating them.

For instance, prior to T I did not know about this board. I did not know that there are tens of thousand that suffer greatly every single day due to T. Of course, I knew that loud music can damage your ears (thus I always wore ear protection when going to concerts etc) and about soldiers being exposed to explosions -- but that's it. No one told me that you could get it from a freaking cold, certain meds, stress, or a hit to the head. So I had almost zero awareness.

Where are the awareness campaigns?

Even celebrities have T ? Really? Where? Where is the ice bucket challenge for that? Like @robinbird suggested.

I totally agree with Dana, It is outrageous. And sad. A very sad world; of noise.

Seriously, if we fail to educate the minds of the most number of people I'm afraid we are doomed to continue suffering in the dark. Unless T really becomes a contagious and life-threatening disease.
Personally, I wish T was a life-threatening disease. Not because I'm malevolent but then at least we would get some recognition. And secondly, I would know that my suffering won't be much longer.


About the WHO (World Health Organization)


Funding


One more thing, I think we could use Youtube for education. Everybody is watching Youtube..

There are some videos on YouTube already. People don't watch them until they have come down with T. It needs to be put on a commercial, probably starting out with a vet, civilian, all nationalities and occupations, and ages, with each person displaying an audio of different sounds and volumes that T person has. People need to be exposed to the noise T makes not just a verbal discriptipn.

 

[Dana]

@Carm

The links you have sent me are a far cry from my point. They both talk about the danger of youngsters losing their hearing while listening to recreational noise.
You have yet to show me that WHO knows all and did everything they can about tinnitus.
Yes, of course they know about soldiers returning with T from the recent wars, but those soldiers are taken care of by the countries who sent them. And we all know that US is paying large amounts of money.
But from that to jump to conclusion that they know all and did all they can for the severe T sufferers who were not in the recent wars......that's a little bit of a stretch.

As a matter of fact I do not know of a single member of TT who has T from the recent wars.

WHO is wrong organization. Send your plea to the AMERICAN TINITUS ASSOCIATION.

Thank you very much for your advice, but it doesn't make sense. For example all the severe T sufferers from this board that I know of from this board are not US residents, so I don't see how ATA could help them.

What are you asking for? Do you think any organization can make that difference you're hoping for? Are you realistic?

Well, try page nr 2, and read there all the answeres to your questions.

There are very little people with loud tinitus

This is your own assumption or you have this information from a serious statistics? Cause if you have such a statistics, a link to that would have been closer to the point, not what you sent me to read as prove for I don't know what.We are talking here about T of all etiologies, not about hearing loss caused by listening to loud recreational noise.

low tinitus people don't care about it

Well, you sound like a low tinnitus person, otherwise you would have bothered to read the posts regarding severe T that were made on this very thread. If, as a low T person, YOU DO NOT CARE, why do you bother to put me questions that you would have known the answer for had you read the posts before this page?

If you don't care, please continue to do so, and don't send me messages just because you have the need to express your malice.

You're lucky if you get 200 signatures!

The last conclusion was that we do not need signatures, which you have also found out had you read the posts.

good luck

Since your wish of good luck is made with a frowning expression, not suited for a sincere wish of good luck, but for an ironic wish, I will disregard it, of course.

 

[attheedgeofscience]

Instead of a list of signatures, a link to the board? ATEOS said that before? Didn't notice. But in that case the board should definitely stay in place.

Usually petitions are completely on a hard copy, not with virtual annexes, that require a computer, Internet connection and a link. The petition must be on a hard copy that contains everything, so it can remain as a document forever. Instead of a reference to a link to the board, I suggest that we post the petition on the board, on a thread, with each person who reads it to post something about it, and then print that thread and send it as a hard copy to the WHO. If it contains hundreds of pages, so much better!

My suggestion for anyone who wishes to engage in advocacy is to be specific and think specific (I call it "smart lobbyism") "More funding" is too broad; lacks focus. So... as an example - and a suggestion - have a look at the following:

Q. If the study is successful then what would be the estimated arrival time to market?
A. It is too early to estimate. The early preclinical work looks very positive and exciting but, until we have done this next study in T sufferers we have no idea of whether those models will be predictive of its activity in humans. So we shall have to wait until this study finishes before we know!! Clinical research just takes a long time, certainly a number of years. However, an effective drug for tinnitus is critically needed and the regulatory authorities who approve medicines for marketing are aware of this and would take matters into account.

One thing you could do with that information is to e.g. contact the health authorities in the US (a behemoth of various departments and sub-departments!) and try to find out more in terms of the so-called "fast track" process (which is typically restricted to drugs that are aimed at life threatening diseases and/or diseases for which there is currently no cure). The "advantage" of dealing with health authorities is that they are obligated to answer you (not so when dealing with private entities e.g. pharmas). See where it leads; make the case, and don't give up too easily. If you persevere, it may lead to something. The basic rule is: if you do not try, you will never succeed.

There are also other researchers out there such as the following:

www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-petition-to-the-ata.6896/page-7#post-102745

But whatever you - or others - decide to do, make sure you do not waste their time (i.e. don't start contacting the researchers above unless you really want to help and have a plan ready).

attheedgeofscience
29/MAR/2015.

 

[Carm]

so I don't see how ATA could help them.

If ATA creates the cure or good treatment, other nations will benefit.

One thing you could do with that information is to e.g. contact the health authorities in the US (a behemoth of various departments and sub-departments!) and try to find out more in terms of the so-called "fast track" process (which is typically restricted to drugs that are aimed at life threatening diseases and/or diseases for which there is currently no cure).

What good does this do when the drug hasn't been through the trials yet? It's in phase 2!

Health authorities laugh you out =)

 

[Danny Boy]

If ATA creates the cure or good treatment, other nations will benefit.


What good does this do when the drug hasn't been through the trials yet? It's in phase 2!

Health authorities laugh you out =)

If the ATA cures tinnitus, there'd be no point in their existence...Don't think they want to cure it, it's always about management with them and the BTA. Notice how contacting them about trobalt and they don't care?

 

[PaulBe]

Much research seems directed at ongoing treatments, not at studying the things that seem to stop the process, such as what Danny reports, or refining surgical options and criteria. That seems the way with medicine these days. Cures aren't profitable in an ongoing sense. Case-in-point: Neuromonics, which costs thousands for something that should cost hundreds.

Admittedly Danny, you're a bit like the guy who just sunk his spade into the ground and found what looks like oil oozing in the hole. Sales and exports are a long, long way off.

 

[Danny Boy]

Much research seems directed at ongoing treatments, not at studying the things that seem to stop the process, such as what Danny reports, or refining surgical options and criteria. That seems the way with medicine these days. Cures aren't profitable in an ongoing sense. Case-in-point: Neuromonics, which costs thousands for something that should cost hundreds.

Admittedly Danny, you're a bit like the guy who just sunk his spade into the ground and found what looks like oil oozing in the hole. Sales and exports are a long, long way off.

Wish I found some oil I'd be rich hahaha.

 

[Jarod]

I dont know about you guys but i want money dumped into stem cell rejuvination research and new drug rejuvination therapy for conchea hairs and or related inner ear systems. So many of us have tinnitus for different reasons. Mine is from SSHL. We need a specific founding location that can direct all this money to this research and awareness to bring in more money. Commercials, talk shows. This all can be done. The best place would probably be a website for us to make that we can donate too and get others to donate too. Heck if we all donated 100 bucks right now we would have 50,000 dollors to start with. Someone needs to make a business awareness plan. At my job alone there are 5 people i know that have ringing just because i cry about mine. I am sure everyone here runs into the same thing. The money is there, they estemate 12billion dollor business if there is a cure made.

 

[Frederico_23]

There are all these very famous and very rich people... and many more music Dj's and rockstars that we don't know about, that have tinnitus.
why they don't invest in the research companies (auris medical, autofony, audion therapeutics, otonomy) that are already testing drugs to end this ordeal?
Tinnitus doesn't has a cure or a better treatment yet because the medical community has ignore it over the past years... you can breath eat and walk lets go.
But with the money of those people it would much easier to acelarate research and hope for a better treatment. I don't see them talking about it in interviews raising awareness and trying to tell the young people that goes to their concerts to be careful with the ears.

This would be very difficult to arrange, but If we try as group forum to contact some of this high profile persons and try them to raise awareness? I'm sure they want their tinnitus to go away as much as we do.


Just and ideia!