Tinnitus Awareness and the Sad Reality

[Starthrower]

An overt act of kindness on a bad day may put me somewhat close to tears.

I know @Jazzer...Lots of hugs for you.

There is this homeless man who is in a wheel chair with an American Flag attached to the back. He is always covered with a blanket and sits at the corner of this market. Every single time I am there I pass by and give him a dollar and talk for a bit. He is always so thankful and starts crying because of kindness. Now, that others have witnessed this a few others are lending this man help.

I remember when someone would actually make contact with me after finding out I was an SOS person. I remember the first time I cried because they took the time to just understand and not walk away even though I never spoke of it to anyone. That moment of eye contact made me cry.

A little bit of human kindness.....

 

[Jazzer]

A little bit of human kindness.....

Human kindness on a sad day - and the effect can be immediate eh Star?
Sometimes a bit embarrassing, but who cares...xx

(Sorry - what's an SOS person....?)

 

[Starthrower]

@Jazzer SOS means Survivors of Suicide. I never knew "that" world existed until I was violently thrown into that group of people. I wrote in my memory account that this was a dark underworld tunnel - no one really knew about. And so many people were there. At that time I lost that feeling of living a life of privilage and eventually realized I never wanted it back.

I understood the lack of eye contact. I understood not wanting to hear about it. I understood being shunned for trying to make a difference. I understand the pain. My pain at that time was so deep. People abandoned me and gossiped among the tinnitus boards back then. Then I was used by a person for his own personal gain with my pain and suffering. I was so lost I could not see it happening.

Strange where getting intrusive tinnitus and facial nerve pain brought me.

 

[Starthrower]

@Ed209 we really need to talk about this because I went through the same situation. You wrote in another thread:

"I'm quite dispondant, however, at the lack of real engagement, and have come to the conclusion that it's a lost cause. So I give up. Trying to motivate the tinnitus community to do something worthwhile is just too exhausting."

I have been there done that. Do we just give up and walk away? I don't know. I will always support Tinnitus Talk.
But I walked away years ago after a very long battle to make a difference and bring awareness. Egos of the organization took over with their own agendas. Sigh...just a start here. This was way before Tinnitus Talk. I think I am ready to be more public now. I may get scared and back off.

 

[EarHair]

@Ed209
Are you some famous person?
If so then your support on the topic can be very very valuable.

That's Ed Shearan!

 

[Alex Prime]

Truth to be told, I always knew that ringing in the ears existed and sometimes had it because of ear wax, it was mild and I was unworried. When I was hit from it more seriously, first thing I did was searching for medication. Imagine my shock when I saw that there is no cure! Later it turned into surprise when I read that 50 million Americans have it! You can win an Election with that! But still, no cure and basically nobody knows what it is. It is idiotic. I think that there is no sufficient reasearch into the condition. I think that it needs the attention mental ilnesses are getting. It is a contributing factor to depression and anxiety, after all. I am doubtful that a cure can not be found after enough research.
It is bizzare and frustrating!

 

[valeri]

@Jazzer SOS means Survivors of Suicide. I never knew "that" world existed until I was violently thrown into that group of people. I wrote in my memory account that this was a dark underworld tunnel - no one really knew about. And so many people were there. At that time I lost that feeling of living a life of privilage and eventually realized I never wanted it back.

I understood the lack of eye contact. I understood not wanting to hear about it. I understood being shunned for trying to make a difference. I understand the pain. My pain at that time was so deep. People abandoned me and gossiped among the tinnitus boards back then. Then I was used by a person for his own personal gain with my pain and suffering. I was so lost I could not see it

This is why I always asked from people on this board not to be judgemental and ignorant of others.
A kind word is all that's needed sometimes!

 

[Starthrower]

@Ed209 I would love to discuss the art of fund raising with you. I have been through so many different experiences with the ATA and understand the feelings you have now. You drive is going well - don't give up. I recently gave up on that organization for personal reasons. Organizations are often uncaring about past donors large or small. They do not give the donor the feeling of being thanked for big donations. And trust me that was not my reasoning at that time and even later on. I got tired of the "good old boys club" and what goes on in the boardroom.

But when I donated to TT not long ago I received the most wonderful responses very promptly!!! They are so thankful when people donate and it makes you feel good to know it helps. And I know your work is really wonderful and TT is very honored because this was your own personal choice.

Short on time here and not feeling well so this is a quick note to you.....

 

[Alex Prime]

Something funny.
Yesterday I chatted with a friend of mine and she said I shouldn't worry about ear noise in silent room, because "everybody has it". She had no idea that this is T and is not normal or not everyone has it! Then I asked her, what do you hear. She said "high pitched noise". I said "same as me". And we had a laugh and shared the smiling poop emoticon on FB. And I wondered why she always used white noise for sleeping!

 

[Starthrower]

Matteo De Nora I thank you and understand why you sailed off.


https://www.tinnitustalk.com/threads/let’s-support-tinnitus-talk.28997/page-6


"This exercise perfectly demonstrates how hard it is to motivate the tinnitus community. We all want treatments and cures, but we can't even put 50 donations together to help the site that supports us the most. I just think it's a huge shame. I often see comparisons to other conditions and illnesses (cancer being an obvious one) - which I see as unnecessary - but you know what? Some of those conditions raise a lot of money for research. What are we expecting to happen when the interest in raising money for tinnitus research is this low?

I will note that @Jaybeee managed to raise over £1000 for the BTA! She, and others like her, are the real heroes in my opinion. It's hard work raising money and I suppose that's why the majority shy away from it. But, the truth is this: it's the only way we'll ever make significant progress. Both in terms of awareness and potential treatments. We need more action!"



Raising money for tinnitus?

How many tinnitus people know the name Matteo De Nora? He donated 20 million dollars for research into tinnitus. And what happened? Did he stay involved? He disappeared from the tinnitus scene after the creation of TRI. Why?

https://www.tinnitustalk.com/threads/tinnitus-research-initiative-tri-2018-conference.21069/


Matteo De Nora, yes.

He has given more than $19M to support TRI.

Source:
https://www.nature.com/articles/nbt.2736


"With governments showing little concern, philanthropists have decided to privately invest their money to ensure progress in tinnitus research. The Tinnitus Research Consortium (Portland, OR, USA) and the Tinnitus Research Initiative (TRI; Regensburg, Germany) were initiated and sponsored by private donors. In the case of the TRI, the founder, Matteo de Nora, himself experienced how annoying and debilitating tinnitus can be, while realizing that tinnitus was a neglected field of research. TRI was then founded with the vision of advancing tinnitus research by increasing funding and improving communication and interaction among researchers. Between 2006 and 2010, he provided more than €12 ($19) million for tinnitus research, funding almost 100 research projects. As a result, international and multidisciplinary research networks have been established, and a scientific meeting has been organized annually. More than 200 publications have resulted from these activities, and tinnitus research has reached the most prestigious journals. Nevertheless, these activities, while laying the groundwork for increasing support of tinnitus research from funding authorities, did not lead to interest from the industry, as hoped for."





Why do donors who give huge amounts get discouraged by the tinnitus community as a whole?

I remember everyone clamoring on about this donation and the creation of a new organization (TRI) people in many organizations like the ATA never spoke about it. Message boards back then never talked about it except to find fault and created a lot of bickering back and forth. This was before the creation of Tinnitus Hub/Tinnitus Talk.

Egotism took over the beauty of the initial donation. So, Matteo eventually drifted off sailing the ocean instead of being involved. I don't blame him.

@Ed202 stated this while trying to do a fundraiser for TT: "This exercise perfectly demonstrates how hard it is to motivate the tinnitus community."

So the tinnitus community wants big donors? Sorry.

Think about it. People expect rich people to pony up and give millions for tinnitus research. Yet, no one knows the name Matteo De Nora? 20 Million dollars.

So many give and they cannot afford to. They go without just to give a bit of money to TT's latest fund raiser. And there are others who can afford to give but think giving their time is enough.

The egotism of board members (TT, ATA) or tinnitus gods or treatment specialists – get in the way of being a unified tinnitus community.

And frankly it will not change.

Again, Matteo De Nora I thank you and understand why you sailed off.

 

[Ed209]

Matteo De Nora I thank you and understand why you sailed off.


https://www.tinnitustalk.com/threads/let's-support-tinnitus-talk.28997/page-6


"This exercise perfectly demonstrates how hard it is to motivate the tinnitus community. We all want treatments and cures, but we can't even put 50 donations together to help the site that supports us the most. I just think it's a huge shame. I often see comparisons to other conditions and illnesses (cancer being an obvious one) - which I see as unnecessary - but you know what? Some of those conditions raise a lot of money for research. What are we expecting to happen when the interest in raising money for tinnitus research is this low?

I will note that @Jaybeee managed to raise over £1000 for the BTA! She, and others like her, are the real heroes in my opinion. It's hard work raising money and I suppose that's why the majority shy away from it. But, the truth is this: it's the only way we'll ever make significant progress. Both in terms of awareness and potential treatments. We need more action!"



Raising money for tinnitus?

How many tinnitus people know the name Matteo De Nora? He donated 20 million dollars for research into tinnitus. And what happened? Did he stay involved? He disappeared from the tinnitus scene after the creation of TRI. Why?

https://www.tinnitustalk.com/threads/tinnitus-research-initiative-tri-2018-conference.21069/


Matteo De Nora, yes.

He has given more than $19M to support TRI.

Source:
https://www.nature.com/articles/nbt.2736


"With governments showing little concern, philanthropists have decided to privately invest their money to ensure progress in tinnitus research. The Tinnitus Research Consortium (Portland, OR, USA) and the Tinnitus Research Initiative (TRI; Regensburg, Germany) were initiated and sponsored by private donors. In the case of the TRI, the founder, Matteo de Nora, himself experienced how annoying and debilitating tinnitus can be, while realizing that tinnitus was a neglected field of research. TRI was then founded with the vision of advancing tinnitus research by increasing funding and improving communication and interaction among researchers. Between 2006 and 2010, he provided more than €12 ($19) million for tinnitus research, funding almost 100 research projects. As a result, international and multidisciplinary research networks have been established, and a scientific meeting has been organized annually. More than 200 publications have resulted from these activities, and tinnitus research has reached the most prestigious journals. Nevertheless, these activities, while laying the groundwork for increasing support of tinnitus research from funding authorities, did not lead to interest from the industry, as hoped for."





Why do donors who give huge amounts get discouraged by the tinnitus community as a whole?

I remember everyone clamoring on about this donation and the creation of a new organization (TRI) people in many organizations like the ATA never spoke about it. Message boards back then never talked about it except to find fault and created a lot of bickering back and forth. This was before the creation of Tinnitus Hub/Tinnitus Talk.

Egotism took over the beauty of the initial donation. So, Matteo eventually drifted off sailing the ocean instead of being involved. I don't blame him.

@Ed202 stated this while trying to do a fundraiser for TT: "This exercise perfectly demonstrates how hard it is to motivate the tinnitus community."

So the tinnitus community wants big donors? Sorry.

Think about it. People expect rich people to pony up and give millions for tinnitus research. Yet, no one knows the name Matteo De Nora? 20 Million dollars.

So many give and they cannot afford to. They go without just to give a bit of money to TT's latest fund raiser. And there are others who can afford to give but think giving their time is enough.

The egotism of board members (TT, ATA) or tinnitus gods or treatment specialists – get in the way of being a unified tinnitus community.

And frankly it will not change.

Again, Matteo De Nora I thank you and understand why you sailed off.

I really wanted to see us smash over a hundred donations on that. What we did, however, was still awesome and I'm thankful for every single penny (cent) that was raised.

It does highlight how difficult it is though - on a much broader scale - to raise significant amounts of money for tinnitus projects. The bulk of the money has to come from the tinnitus community, but unfortunately, there is far too much apathy.

Generally speaking, there is a lack of interest, yet many expect and want forward momentum. We can't have it both ways! We must decide to get involved if we expect anything to change any time soon. Constantly complaining on a forum (about the lack of treatments), that nobody reads (in the wider world), doesn't help the cause in any meaningful way.

As we know, we fell just 3 donations short of our minimum target of 50. For any kind of integrity to remain, I had to stick to my guns, and not do the prize draw; even though I was dying to do it. I was going to make a video of the number being drawn, and then send the money to the respective winner.

Anyway, raising money is hard no matter what the cause is. Some causes are just easier than others, I suppose. However, it's my strong belief that most of us can afford to spare £5. I know that some of us must be genuinely struggling, financially, so I totally understand why we can't all throw money at it.

 

[Starthrower]

You did a good job Ed. Thank you for including that prize money and your own donation to the project.

I really wanted to see us smash over a hundred donations on that. What we did, however, was still awesome and I'm thankful for every single penny (cent) that was raised.

It does highlight how difficult it is though - on a much broader scale - to raise significant amounts of money for tinnitus projects. The bulk of the money has to come from the tinnitus community, but unfortunately, there is far too much apathy.

That is why I wanted to push for your fundraiser and also donate. Of course after it was over a lot of missing posters suddenly showed up again. Those who could have helped. But that egotism of not giving to help this site - this organization - is what hurts any type of cohesive needs to build this site and make it strong and support both Steve and Marku's creation. Which has been under attack else where.

I believe in loyalty. Even if it means standing up and speaking out about what is wrong. If people do not stand up for the creators of this organization by supporting such fundraisers (those who are financially able) we are losing a battle.

Yes. I did a lot of fundraising for the ATA and a special program. Including a celebrity golf tournament. It was in my planning stages and locally I had a lot of support. I did fundraisers here in my town and raised over 10k. I helped with another's fundraiser through the OHSU Tinnitus Clinic and raised over 20K for the clinic and my friend who ran the department.

Ed...OHSU suddenly closed the Tinnitus Clinic and took that money with them.

The ATA program was ended because of egotism - in particular of one individual - whose intentions were to cause harm to the ATA past board members.

Matteo De Nora...I remember people on the internet speaking ill of his intentions. Speaking badly of TRI and it's creation.

This is what holds back any hope of awareness for fundraising.

Thank you so much Ed for what you were able to accomplish and for those who gave freely even though they could not afford to do so easily.

 

[Ed209]

You did a good job Ed. Thank you for including that prize money and your own donation to the project.


That is why I wanted to push for your fundraiser and also donate. Of course after it was over a lot of missing posters suddenly showed up again. Those who could have helped. But that egotism of not giving to help this site - this organization - is what hurts any type of cohesive needs to build this site and make it strong and support both Steve and Marku's creation. Which has been under attack else where.

I believe in loyalty. Even if it means standing up and speaking out about what is wrong. If people do not stand up for the creators of this organization by supporting such fundraisers (those who are financially able) we are losing a battle.

Yes. I did a lot of fundraising for the ATA and a special program. Including a celebrity golf tournament. It was in my planning stages and locally I had a lot of support. I did fundraisers here in my town and raised over 10k. I helped with another's fundraiser through the OHSU Tinnitus Clinic and raised over 20K for the clinic and my friend who ran the department.

Ed...OHSU suddenly closed the Tinnitus Clinic and took that money with them.

The ATA program was ended because of egotism - in particular of one individual - whose intentions were to cause harm to the ATA past board members.

Matteo De Nora...I remember people on the internet speaking ill of his intentions. Speaking badly of TRI and it's creation.

This is what holds back any hope of awareness for fundraising.

Thank you so much Ed for what you were able to accomplish and for those who gave freely even though they could not afford to do so easily.

That's very commendable of you, Starthrower. I've personally spent well over a £1000 in charitable donations (for various causes) over the last 3 years, or so.

So, it boggles my mind when we can't get people to spend just £5 on a cause that they apparently care, 'deeply', about. I thought we'd be falling over each other to help out. But as Jim Morrison says: people are strange!

Again, I'm deeply indebted to all those who contributed towards the TT fundraiser. It's about team work.

 

[coffee_girl]

Yep I never knew what tinnitus was until i had it, but then again at the end of the day I have to take responsibility for my own ignorance and realize that I caused the situation to myself. No one else was at fault except for myself

 

[Jazzer]

I have to admit, that in the initial stage of panic, I also briefly considered habituation..but later I realized, that the whole habituation concept is nothing short of an insult.

First off...if you take away the antidepressants and masking sounds, I highly doubt that there would be too many of the so called "habituated" sufferers left standing.
Second...Im NOT the one who needs to be habituated or re-trained (or whatever they call that Jestraboff crap)
I was minding my own business, when this nasty, arrogant cocksucker invaded the inside of my head and decided it wants to destroy my life just for some kicks and giggles.

Since then, I have put him on an eviction notice with a set date, just to let him know who's in charge here, but I dont think I will have to enforce it, since right now it seems, that he's on his way out anyway.
Fu*ck tinnitus...if I'm going down, I'm taking this evil bastard with me, as this time he fu*ked with the wrong person.
This is all I have to say about that.

Wolf - I love your militant approach - this predicament is the worst 'sack of shit' the worst piece of bad luck we could ever get saddled with.
There is no question about that.

Building public awareness seems like an impossibility, particularly when 'hobbycraft Tinnitus dabblers' keep sayin that it's just a psychological mindset problem
- "I got over mine, and you can get over yours if you apply yourself properly" - as some prat said on here the other day.

Tinnitus is a killer - plain and simple !!!"

People don't have a clue, as we didn't, and then once they've got it, it's simply too late.

Habituation is not a cure.
It is simply an offer of hope, to the hopeless, that a degree of acceptance might be helpful.
"Well, great big hairy bananas, that's really nice of you....thank you so much!"

Having said that - we do have to try to accept reality, because we don't actually have a choice.

Nice life...eh??

 

[valeri]

Yep I never knew what tinnitus was until i had it, but then again at the end of the day I have to take responsibility for my own ignorance and realize that I caused the situation to myself. No one else was at fault except for myself

Out of curiosity, in the last few years have you heard of things like Alzheimer's, MS, Parkinson's, Motor Neuron Disease.....

 

[Contrast]

before i had tinnitus i had heard of ringing in the ears after loud noise due to a few military men who had it and some dude on the internet forum who was talking about it.

I wasn't in the slightest expecting to become the next victim and i didn't know jackshit about any mechanisms behind it.

 

[Starthrower]

People don't have a clue, as we didn't, and then once they've got it, it's simply too late.

@Jazzer this is so true. I never heard the word tinnitus before nor had I spoken to anyone who suffered from it.

I wasn't in the slightest expecting to become the next victim and i didn't know jackshit about any mechanisms behind it.

@Contrast you are a young person so I wonder if someone had spoken to let's say your class room about tinnitus would you have listened and adjusted some of the changes like not listening to loud music via earbuds?

 

[BobbyH]

there is far too much apathy.

Ed,

I say this with the utmost respect for all. As a person who has suffered a lifetime of tinnitus but only been here at Tinnitus Talk for a very short time, the word "apathy" didn't cross my mind but rather a severe lack of cohesiveness. All successful causes are driven by a cohesive mindset of oneness. I'm not apathetic to the cause because I've suffered for over 50 years. If anyone or anything gets me to tomorrow, I'm grateful.

I've learned very quickly to be somewhat fearful that I'll be pigeonholed here into the "wrong" faction depending on who I reply to, who I "agree" with, what particular "treatment" thread I engage in, or "group" I post to.

I'm sure you are correct in your assessment of apathy but people who suffer whether it's from breast cancer, Muscular Dystrophy, Parkinson's, or Tinnitus, can change the world if they speak with one voice. I don't see one voice here.

I've learned much here but without cohesiveness, it's maybe time to move on.

Bobby