Why Aren’t You Donating Time or Money for Tinnitus Awareness / Research?

[Jack Straw]

When my tinnitus started to affect my life significantly more than it did before I felt hopeless and frustrated with the current state of tinnitus research and awareness. I was frustrated with the direction and lack of help certain organizations were giving in respect to tinnitus.

Initially I joined this community to find support and help regarding tinnitus. Very quickly I realized that although many people were interested in finding a cure and discussing tinnitus, very few were actually stepping up to help make that happen. It became clear to me that if I wanted to see a change in the world I will have to step up and help do it myself.

I am not a researcher or a doctor, but I am someone who passionately wants to see tinnitus die a horrible death and be erased from existence. This is why over the past couple of months I have donated a lot of my free time to help Tinnitus Hub become a leader in the tinnitus world. This is a slow process, which will take time, but you always have to start from the bottom and build up.

There is always so much work to be done with Tinnitus Hub - it is INSANE. I literally had no idea how much work @Markku, @Hazel and @Steve were putting in (just to name a few). They are basically working full time jobs doing work for Tinnitus Hub on top of their personal lives and other jobs. They are working their asses off to make a difference that will help you, but most people just sit back and don't reciprocate.

This showed me I literally have no excuse to donate whatever time I have to help. The best thing about it, is that donating your time is FREE. There is no monetary excuse to not donate your free time to help Tinnitus Hub reach the goal that @Markku has.

I have started to get frustrated when I see people constantly complain on the forum, but don't step up to try to help fix that problem. If you want there to be change in the world of tinnitus then HELP! Any help you can give would help Tinnitus Hub greatly. It can free up @Markku and @Hazel's time so they can focus on other things that will help us gain popularity.

So I challenge all of you to answer, why aren't you helping make tinnitus a thing of the past by donating your time or money?

Be the change you wish to see in the world. - Gandhi

​

 

[another sean]

I think for many, there have been a lot of disappointments in looking for cures and can feel defeated, so to actually step up again can feel like they're just pissing in the wind.

Of course everyone wants a cure, but feeling defeated can take a toll on someone and drain their motivation, no matter how badly they want something.

 

[Jack Straw]

I think for many, there have been a lot of disappointments in looking for cures and can feel defeated, so to actually step up again can feel like they're just pissing in the wind.

Of course everyone wants a cure, but feeling defeated can take a toll on someone and drain their motivation, no matter how badly they want something.

I agree that looking for a cure can be demoralizing when nothing is there or it will take a while.

But I am talking about using time and money to help promote awareness or research for it. The only way we can get a cure is to keep pushing awareness and research which everyone is capable of and can help do.

 

[TimmyC]

It doesn't seem hard to donate here on Tinnitus Talk, but the problem with funding research is that they need thousands/millions of dollars, and most sufferers just can't afford it.

I think when a company can bring a product that at least works well enough to help, then funding will come in at a greater rate.

 

[Jack Straw]

It doesn't seem hard to donate here on Tinnitus Talk, but the problem with funding research is that they need thousands/millions of dollars, and most sufferers just can't afford it.

I think when a company can bring a product that at least works well enough to help, then funding will come in at a greater rate.

So why not donate time to help spread awareness or help with Tinnitus Hub? It doesn't just have to be money.

I can see you have donated to Tinnitus Talk so I am not addressing you specifically but as a community.

 

[Starthrower]

There is always so much work to be done with Tinnitus Hub - it is INSANE. I literally had no idea how much work @Markku, @Hazel and @Steve were putting in (just to name a few). They are basically working full time jobs doing work for Tinnitus Hub on top of their personal lives and other jobs. They are working their asses off to make a difference that will help you, but most people just sit back and don't reciprocate.

@Jack Straw a big hug for everything you are doing. And thank you.

I guess that was (is) a point I tried to make. @Markku, @Steve and @Hazel deserve so much admiration for the time and personal money it has taken to make Tinnitus Talk/Hub successful. A simple donation or as you wrote time given for awareness is important because... It makes one feel appreciated. Even a simple thank you.

Crap, I just deleted a lot of my message because... oh well.

Never mind.

 

[OnceUponaTime]

@Jack Straw,

I'd like to help.
What kind of help you need??
What can I do from my computer in New York?

Once

 

[Ed209]

When my tinnitus started to affect my life significantly more than it did before I felt hopeless and frustrated with the current state of tinnitus research and awareness. I was frustrated with the direction and lack of help certain organizations were giving in respect to tinnitus.

Initially I joined this community to find support and help regarding tinnitus. Very quickly I realized that although many people were interested in finding a cure and discussing tinnitus, very few were actually stepping up to help make that happen. It became clear to me that if I wanted to see a change in the world I will have to step up and help do it myself.

I am not a researcher or a doctor, but I am someone who passionately wants to see tinnitus die a horrible death and be erased from existence. This is why over the past couple of months I have donated a lot of my free time to help Tinnitus Hub become a leader in the tinnitus world. This is a slow process, which will take time, but you always have to start from the bottom and build up.

There is always so much work to be done with Tinnitus Hub - it is INSANE. I literally had no idea how much work @Markku, @Hazel and @Steve were putting in (just to name a few). They are basically working full time jobs doing work for Tinnitus Hub on top of their personal lives and other jobs. They are working their asses off to make a difference that will help you, but most people just sit back and don't reciprocate.

This showed me I literally have no excuse to donate whatever time I have to help. The best thing about it, is that donating your time is FREE. There is no monetary excuse to not donate your free time to help Tinnitus Hub reach the goal that @Markku has.

I have started to get frustrated when I see people constantly complain on the forum, but don't step up to try to help fix that problem. If you want there to be change in the world of tinnitus then HELP! Any help you can give would help Tinnitus Hub greatly. It can free up @Markku and @Hazel's time so they can focus on other things that will help us gain popularity.

So I challenge all of you to answer, why aren't you helping make tinnitus a thing of the past by donating your time or money?


Be the change you wish to see in the world. - Gandhi

Well said, Jack!! I've been saying this for as long as I can remember, and I honestly don't think people realise how much work actually goes on. It's insane!!

It's easy to complain, but complaining doesn't achieve anything. Just the simple act of sharing the podcast (or other material) on your social media channels goes a long long way.

And never discount the value of even a small contribution, because, with the number of people we have here, it can add up to be something huge.

 

[Jack Straw]

@Jack Straw,

I'd like to help.
What kind of help you need??
What can I do from my computer in New York?

Once

@Markku and @Hazel would be happy to talk with you regarding help we need!

Thank you for stepping up!

 

[Hazel]

I'd like to help.
What kind of help you need??
What can I do from my computer in New York?

Hey there, thanks for volunteering! The list of areas where we need help is endless really: legal, data analysis, writing, advocacy, web design, etc. It all depends on your skills, interests, and availability

Please PM me and Markku, and let us know whether you're willing to have a Skype call with us sometime in the near future.

 

[Contrast]

I have already donated several times to Mass Eye and Ear, Hearing Health Foundation and Hough Ear Institute, but now I'm broke because I'm an unemployed loser with an unstable mental illness to go along with otological problems, and all my money from my previous job saved up is gone. I'm pretty much only giving towards hearing loss and pain hyperacusis research, I do believe curing hearing loss will solve the majority of tinnitus cases.

Once I get a job I will donate again, but next time It will only go towards Mass Eye and Ear, since they are connected with Decibel Therapeutics via Professor Liberman's research on cochlear synaptogenesis and studying noise induced pain.

 

[Jack Straw]

I have already donated several times to Mass Eye and Ear, Hearing Health Foundation and Hough Ear Institute, but now I'm broke because I'm an unemployed loser with an unstable mental illness to go along with otological problems, and all my money from my previous job saved up is gone. I'm pretty much only giving towards hearing loss and pain hyperacusis research, I do believe curing hearing loss will solve the majority of tinnitus cases.

Once I get a job I will donate again, but next time It will only go towards Mass Eye and Ear, since they are connected with Decibel Therapeutics via Professor Liberman's research on cochlear synaptogenesis and studying noise induced pain.

Thank you for supporting and donating to research @Contrast.

 

[spedgas]

It doesn't seem hard to donate here on Tinnitus Talk, but the problem with funding research is that they need thousands/millions of dollars, and most sufferers just can't afford it.

I think when a company can bring a product that at least works well enough to help, then funding will come in at a greater rate.

I agree with this. I've contributed to three different tinnitus research groups in the last five months. I don't mind doing this at all. There is the overriding feeling that my $100 dollars here and there is just a drop in the bucket. I'm starting to understand the clear gap between how bad we need an effective treatment/cure and how bad those in power think we need these things. It feels like our own unelected representatives don't fight for the right things. Once something works well enough and has sales behind it we should see more progress.

I'm starting to doubt this occurs in my lifetime though.

 

[TimmyC]

I agree with this. I've contributed to three different tinnitus research groups in the last five months. I don't mind doing this at all. There is the overriding feeling that my $100 dollars here and there is just a drop in the bucket. I'm starting to understand the clear gap between how bad we need an effective treatment/cure and how bad those in power think we need these things. It feels like our own unelected representatives don't fight for the right things. Once something works well enough and has sales behind it we should see more progress.

I'm starting to doubt this occurs in my lifetime though.

I wouldn't lose hope right away. I know why there is skepticism behind the Neuromod device because the community has been burned before (ACRN), but this work comes from over 20 years of research from 3 different universities.

If Neuromod, or Shore's device causes enough buzz, then more companies will jump on board. Funding will come in if companies notice the potential profit. I know over a dozen people who have tinnitus and just don't talk about it because they had to learn to live with it. All of them would buy a device in a heartbeat if it existed.

 

[TheDanishGirl]

I wouldn't lose hope right away. I know why there is skepticism behind the Neuromod device because the community has been burned before (ACRN), but this work comes from over 20 years of research from 3 different universities.

If Neuromod, or Shore's device causes enough buzz, then more companies will jump on board. Funding will come in if companies notice the potential profit. I know over a dozen people who have tinnitus and just don't talk about it because they had to learn to live with it. All of them would buy a device in a heartbeat if it existed.

The people I know who have tinnitus, don't give a s*** about it, and they are not gonna buy the device. I really think this device will only be bought by those of us who have intrusive tinnitus and are desperate. I would not be the least bit surprised if the sales numbers are low compared to how many people have tinnitus... that's what I expect... you have to be quite/very bothered by your tinnitus to throw away a large bunch of money on something that is not even guaranteed to work on your tinnitus.

 

[lapidus]

I've been donating to Hyperacusis Research Organization for years but at the moment I'm in the same situation as @Contrast and pretty broke. Whenever I do have some spare change to donate I always ponder if I should donate it to Hyperacusis Research as usual or finally donate to Tinnitus Talk, which I really want to since this place is great. But I always choose the selfish route I guess and donate to research. It would be nice to have the benefactor badge though

Edit: I just donated to Tinnitus Talk. Gimme that badge, bois!

 

[lapidus]

The people I know who have tinnitus, don't give a s*** about it, and they are not gonna buy the device. I really think this device will only be bought by those of us who have intrusive tinnitus and are desperate. I would not be the least bit surprised if the sales numbers are low compared to how many people have tinnitus... that's what I expect.. you have to be quite/very bothered by your tinnitus to throw away a large bunch of money on something that is not even guaranteed to work on your tinnitus.

This is very true. If someone approached me during 1999-2013 with the Neuromod device I'd probably say "no thank you". I was 200% habituated to my then "normal" tinnitus and it wouldn't be worth the money and amount of effort the treatment demands. During those years I never once typed in "tinnitus" in a search engine.

 

[Tamara]

I don't know what to do to help anymore. Neither do the people who are involved, directly, in the treatment of tinnitus and hyperacusis.

The big problem is people who have an intrusive tinnitus, which interferes in several aspects of their lives.

I've been to an internationally recognized ENT and he didn't even care about me when he saw that my case was serious, imagine something collective. The only thing that mattered was paying for the consultation: $200, without any examination and speaking things about tinnitus and hyperacusis that I know are wrong.

We have to show to people, worldwide, that tinnitus can be a very serious problem.

Everything I tried did not get any results. I asked for the TV network several times and they said that they would only make a program about tinnitus and hyperacusis if they found the subject important.

 

[Jack Straw]

I don't know what to do to help anymore. Neither do the people who are involved, directly, in the treatment of tinnitus and hyperacusis.

The big problem is people who have an intrusive tinnitus, which interferes in several aspects of their lives.

I've been to an internationally recognized ENT and he didn't even care about me when he saw that my case was serious, imagine something collective. The only thing that mattered was paying for the consultation: $200, without any examination and speaking things about tinnitus and hyperacusis that I know are wrong.

We have to show to people, worldwide, that tinnitus can be a very serious problem.

Everything I tried did not get any results. I asked for the TV network several times and they said that they would only make a program about tinnitus and hyperacusis if they found the subject important.

If you can spare some of your free time, you can help Tinnitus Hub with our massive workload.

The more people that can help the more we can do for tinnitus research and awareness.

 

[Hazel]

always choose the selfish route I guess and donate to research. It would be nice to have the benefactor badge though

Edit: I just donated to Tinnitus Talk. Gimme that badge, bois!

Thanks a ton for your donation! Looks like you got your badge now

Just to clarify, because I know many members are not aware of this: Tinnitus Hub (the managing entity of Tinnitus Talk) does actually contribute directly to research. We have conducted several large patient surveys and shared that data for free with researchers, which has already led to several academic publications. We are also part of several research consortiums like ESIT and TIN-ACT. I actually attended a TIN-ACT meeting last week, and will publish a report on the Tinnitus Hub blog about it soon. It's a great opportunity for us patients to be directly involved in research!

 

[Tanni]

I think I mentioned this on a previous post, but I think the non-sufferers - the general public - need to care, in order to get the big bucks.

I too would love to help out any way I can. Not sure where is best to donate to help research? I would have thought the British Tinnitus Association, but a few people have been quite negative about it so maybe not?

I'm not sure I have too many 'real world' skills to offer, but happy to contribute in terms of time if needed.

 

[TuxedoCat]

Not sure where is best to donate to help research? I would have thought the British Tinnitus Association, but a few people have been quite negative about it so maybe not?

Hi Tanni, I donate to Tinnitus Hub/Tinnitus Talk and as Hazel said they are part of the research community plus they do other things. There is a fundraising thread for Tinnitus Talk in the Awareness and Fundraising section. If you go to that thread you'll find an explanation of all the recent projects that Tinnitus Hub/Talk have completed. It''s actually very impressive for a completely volunteer organization.

Tinnitus Week 2019 — We Will Donate $500 to Tinnitus Talk If Members Can Raise the Same Amount First

Also, if you go to Worthy Causes there are several places where you can donate to research. However, take your time and read through the summaries that are posted and then decide. Myself and others will be happy to answer any questions you might have.

BTA is a good organization as far as providing support to the tinnitus community. Many of us don't agree with everything they do or say but overall they do quite a bit for a small organization. They have sponsored some research but are not fundraising for that right now. I think their latest appeal is for support for their helpline. David Stockdale has said that BTA will start fundraising for a cure in the Spring, but has not shared any details.

Some on the forum have been considering donations to Action on Hearing Loss in the UK because they talk about research for a cure and run TV adverts to raise awareness.

Personally, I'm a little wary of BTA right now because they've chosen a comedian to be their ambassador after we've had more than one conversation on Tinnitus Talk asking them not to trivialize tinnitus and to raise awareness to the entire spectrum of the condition. And unfortunately, the comedian refuses to talk about it.

Best, TC

 

[Tanni]

Hi Tanni, I donate to Tinnitus Hub/Tinnitus Talk and as Hazel said they are part of the research community plus they do other things. There is a fundraising thread for Tinnitus Talk in the Awareness and Fundraising section. If you go to that thread you'll find an explanation of all the recent projects that Tinnitus Hub/Talk have completed. It''s actually very impressive for a completely volunteer organization.

Tinnitus Week 2019 — We Will Donate $500 to Tinnitus Talk If Members Can Raise the Same Amount First

Also, if you go to Worthy Causes there are several places where you can donate to research. However, take your time and read through the summaries that are posted and then decide. Myself and others will be happy to answer any questions you might have.

BTA is a good organization as far as providing support to the tinnitus community. Many of us don't agree with everything they do or say but overall they do quite a bit for a small organization. They have sponsored some research but are not fundraising for that right now. I think their latest appeal is for support for their helpline. David Stockdale has said that BTA will start fundraising for a cure in the Spring, but has not shared any details.

Some on the forum have been considering donations to Action on Hearing Loss in the UK because they talk about research for a cure and run TV adverts to raise awareness.

Personally, I'm a little wary of BTA right now because they've chosen a comedian to be their ambassador after we've had more than one conversation on Tinnitus Talk asking them not to trivialize tinnitus and to raise awareness to the entire spectrum of the condition. And unfortunately, the comedian refuses to talk about it.

Best, TC

Hi TuxedoCat (great name),

Thanks for such a detailed response. I am reading through all the links you posted very carefully, as you suggest. My personal preference is to support research into something resembling a cure, as we desperately need one!

So from what you have posted I probably won't donate to BTA after all, and will certainly be donating here - if only to get the 'Benefactor' badge

 

[TuxedoCat]

Thanks for such a detailed response. I am reading through all the links you posted very carefully, as you suggest. My personal preference is to support research into something resembling a cure, as we desperately need one!

Hi Tanni - Where there is research there is hope. That's what gets me through the day, knowing that there are people out there who care enough to be devoting their time and talents to finding the mechanisms of tinnitus in the brain which will lead to finding a cure one day.

So from what you have posted I probably won't donate to BTA after all, and will certainly be donating here - if only to get the 'Benefactor' badge

If you can donate to Tinnitus Talk and become a benefactor, that would be awesome. We need rationale voices here.

Keep an eye on BTA. Their CEO, David Stockdale, does check in here, usually on his own time, to answer questions. Just yesterday I saw on BTA's website that he has started a Blog and posted about his recent attendance at the Association for Research in Otolaryngology Midwinter Meeting. David has told us that in the spring BTA will start fundraising for a cure. His attendance at the meeting and blog post may be the start of events leading up to fundraising. One thing I will say about BTA is that they are pretty transparent about most things.

Welcome aboard, Tanni!
TC

 

[Daniel Lion]

So why not donate time to help spread awareness or help with Tinnitus Hub? It doesn't just have to be money.

I can see you have donated to Tinnitus Talk so I am not addressing you specifically but as a community.

Agree mate, but I would pose the question as a fellow American, why in the largest democracy in the world do we have the lowest voter turn out?

Disgruntled Americans, disillusioned and consumed with fear, hate and misunderstanding.

We don't vote, we can't be bothered. I don't have a credit card, and borrowed one to donate to this site because it's awesome. There are tons of info here, better than most ENTs or hospitals, and the support and love is top notch.

I agree people should make an effort, but it's their choice, what can you do? There are people here who work in the corporate world and can't cough up a measly hundred bucks, but again... their choice.

I support you in your efforts to galvanize people, and your words certainly give me cause to reflect on what I can do more to help fellow sufferers. Anyways, keep up the good work, well done to our fearless and committed staff, we'd be in the dark wilderness without their hard work. I am a cantankerous, cynical, bastard, but I'm grateful... thanks.

 

[ringinghours]

I don't donate to tinnitus research because it won't make a difference. If there was a company that showed promise in developing a cure for tinnitus and was publicly traded on the stock market I'd buy the stock.

 

[all to gain]

Although every little helps, real money is needed to find a cure(s) for tinnitus. The only way to get this is money is to persuade governments (especially the military) and big companies to step up. You need people with tinnitus within these organisations to become vocal. You need famous people with tinnitus to become vocal. But it's got to be done in a none jokey way, i.e. the seriousness of tinnitus needs highlighting, the pure horror of it. You need the maker of Baby Driver the film with the tinnitus character to step up and make a serious documentary about tinnitus or an advert about tinnitus. Or the same for A Star Is Born. It's only by contacting these people that real change will be made. I've just contacted Edgar Wright's agent. Will it get anywhere? Probably not.

Tinnitus doesn't seem like something serious to most people as they have never experienced it. Hell, I know this from people close to me. They just don't get it!!

Fundraising is good, but better time would be spent on lobbying others with lots of money to spend it.

 

[Badger19]

Hey there, thanks for volunteering! The list of areas where we need help is endless really: legal, data analysis, writing, advocacy, web design, etc. It all depends on your skills, interests, and availability

Please PM me and Markku, and let us know whether you're willing to have a Skype call with us sometime in the near future.

I have an economics degree and had quite some maths and statistics. But I never used it after graduating I'll see if I can pick stats up again, if I feel like I'm comfortable in stats I'll let you know.

 

[Jazzer]

I no longer make a financial contribution.
Tinnitus stole my career.
I lost my profession.
My wife now works two jobs to keep us afloat, at age 74.
However, together with my video maker Phil Swallow, we did donate our time, our expenses, our expertise to create an awareness video, which has been viewed thousands of times.
We did our bit.

Dave x
Jazzer

 

[Jaysterk]

The people I know who have tinnitus, don't give a s*** about it, and they are not gonna buy the device. I really think this device will only be bought by those of us who have intrusive tinnitus and are desperate. I would not be the least bit surprised if the sales numbers are low compared to how many people have tinnitus... that's what I expect.. you have to be quite/very bothered by your tinnitus to throw away a large bunch of money on something that is not even guaranteed to work on your tinnitus.

But we don't need most people to buy the device. All we need is most people to donate. That is a lot easier to do.