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

[Ed209]

Helping the cause is not about just giving money, that is merely one facet. One can contribute in so many ways as has been pointed out already, and even a simple like or share of a post on social media can make a significant difference, especially if many others do the same.

Donating our time so that certain actions can be fulfilled is monumental and in doing so we are directly helping ourselves and others. There are people here who have given so much already that I'm truly blown away and humbled. In fact, I'm quite embarrassed that there's an ambassador badge next to my name which is something that I don't think I'm worthy of. If anything, I'm an ambassador of being opinionated and having a big mouth , as arguments seem to follow me around a bit too much. All well-intentioned though!

What we need are more action takers amongst the community.

 

[Jazzer]

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.

Spot on @ringinghours.

If there was any company showing 'real' promise, big business would be interested.

We need a stroke of genius backed up by substantial scientific data. We are quite simply not there... x

 

[Ed209]

Spot on @ringinghours.

If there was any company showing 'real' promise, big business would be interested.

We need a stroke of genius backed up by substantial scientific data. We are quite simply not there... x

Where's our fight for future generations?

I'm aware that this isn't everyone's battle and nobody should feel that anything is expected of them, but if the community as a whole was more vocal away from forums, etc, then the world would take it more seriously.

If we could say unequivocally that no cure was coming in the next 20 years, then that to me would suggest that more needs to be done now. Not tomorrow, or next week, or next year: now.

That's my two cents at least.

 

[kamil1364]

I don't really donate any money, but I try to raise awareness about tinnitus someway. I still attend to school and I had made tinnitus presentation recently to my classmates, as I feel it's ridiculous, especially considering that most cases are noise-induced and thus preventable, that no one really knows about it, and how devastating it can be to your mental and social life. Donating to research is really a great thing to do, but I believe we should really focus on prevention. And I don't talk typical ,,turn down your headphones or you go deaf when you are older" kind of warnings. No one knows that, but in some cases you may literally save your life by turning your iPod down a bit.

 

[Michael01]

I can't donate money right now, as before I found Tinnitus Talk, I depleted my bank account looking for a way to get at least some peace of mind. I need to build that back up again. But if there's any other means I can help in some small way, I'm always willing to help or at least try to.

 

[livewire77]

I just stumbled upon The Bionics Institute tinnitus research program, and they have raised just $3000 AUD from their goal of $100,000 AUD that they need to raise for their current program.

OMG. Is it really so hard for people here to raise $100,000 AUD? There are more than 30,000 members here. If only 1000 of them gave them $100 AUD, The Bionics Institute could continue their research faster. They have results to build on.

Come on. Sitting on the couch and lamenting solves nothing. I'm a poor guy from a poor country and I gave them yesterday $100 AUD and I will give them more.

Many of you are from much richer countries. You have the money. You can make a difference. DONATE. Or do you want take your money to the grave? Remember, your last jacket will have no pockets. If you are not satisfied with what ATA, BTA or similar organizations are doing, sponsor research directly. I also donated to Hough Ear Institute.

 

[linearb]

I make some four digit amount of tax-deductable donations every year; however, even though I am personally more bothered by tinnitus than anything else in my life, I don't think it's the most terrible thing going on in the world and I also don't think that the difference made by the money I'd donate to a 501(c)3 like the Hough Ear Institute makes as much difference in the world as doing something like donating to a 501(c)3 that does bail relief to directly get victims of fascist cops out of prison until their charges are dismissed, so that tends to be where my energy goes.

It's a personal decision and of course, given how much I hate tinnitus, I am glad that others donate to this work...

 

[Loui]

I'm thinking about donating a sum but I don't know which research to support. Which organization is most likely to find a cure?

I'm thinking that Thanos Tzounopoulos is a strong candidate.

I have tinnitus and mild hyperacusis. I can work and function even though I will forever regret the mistake I made which eventually led me to this forum. I had heard about tinnitus briefly but didn't realize how easy it was to get it. I had no idea that hyperacusis existed. I lived normal life, no occupational noise and never played an instrument. I have always protected my hearing while using power tools and always kept the music low in my earbuds. Little did I know that it was this easy to get hearing damage.

I would want the governments to regulate noise levels and do more controls. That's the way to protect innocent people from getting hearing damage. But since a lot of us already have ended up with these terrible conditions I would of course want a cure sooner rather than later.

 

[Watasha]

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.

Not entirely true. While millions of dollars would certainly help, many researchers need seed grants in the tens of thousands to show proof of concept. Once done, they can go to NIH and get higher amounts of funding. So making a difference is more feasible than we think.

 

[Starthrower]

➝ Let's Celebrate Tinnitus Talk Supporters!

Over the last decade we have donated to many of the larger tinnitus organizations and educational institutions including in the United States the OHSU. And we have been greatly disappointed with the results.

That is why each year we (my husband and I) donate to Tinnitus Talk only. Without this site available to everyone, including the Tinnitus Talk Podcast with regular tinnitus people and experts in tinnitus research who give their time without monetary reasons, would not be represented.

Please donate any amount if possible to keep this small on-line community alive. It will make a difference. @Hazel and @Markku behind the scenes giving so much time and energy will be a way to say a simple thank you. And also those members who work beside them. I don't know each name. Maybe someone could share that information.

And if you cannot donate, no worries. Having each person's voice/words is so important.

Jen

 

[Damocles]

I donate a small amount to Tinnitus Talk when I can (although it's not enough as far as I'm concerned), and that's about it.

The problem is I'm racing homelessness right now.

My parents are elderly and supporting me; needless to say once they've moved on, I'll be fending for myself in the big b̶a̶d̶ noisy world.

So my priority is surviving and establishing financial security (via having re-entered education) at this moment in time.

Ideally, what I'd like to happen as the future unfolds: is for myself to land a stable career, and for Tinnitus Talk to become the sole charity representing us and taking donations which could be awarded to promising research/researchers (maybe via community votes? or just @Hazel's wisdom, even).

That's obviously very idealistic and a far stretch for now, but I truly believe the best thing that could happen for us, would be for the useless "charitable" organisations - which leech what little money is donated to this pitifully underfunded illness - currently "representing" us, to be torn down and buried away forever.

This could be achieved (one day) by our community convening with others, and agreeing to boycott the ATA and BTA (as examples), thereby starving them of funding.

Anyway, you catch my drift. Tinnitus Talk could become something much larger than it is right now, but it's hard because we haven't all got our sh*t together at the same time.

It's very frustrating to see the potential, but be powerless to do anything to help shape it. Still, I see enthusiasm from members wanting to do more on here, all the time. To those people I want to say: keep your foot on the pedal. Even if people don't seem to share your enthusiasm, don't stop trying. There is no cause more worthy of our time and money, than stamping out the hideous thing which has taken (in one way or another) the lives of us and our companions.

Then again, should all this just be a pipe-dream; everything I've written here be akin to a tree falling in an empty forest, and the global tinnitus community continue to exist in a state of disharmonious entropy, then there's always the hope that someone might attack Jeff Bezos with a vuvuzela; then we'll really start seeing some action.

 

[Starthrower]

Ideally, what I'd like to happen as the future unfolds: is for myself to land a stable career, and for Tinnitus Talk to become the sole charity representing us and taking donations which could be awarded to promising research/researchers (maybe via community votes? or just @Hazel's wisdom, even).

That's obviously very idealistic and a far stretch for now, but I truly believe the best thing that could happen for us, would be for the useless "charitable" organisations - which leech what little money is donated to this pitifully underfunded illness - currently "representing" us, to be torn down and buried away forever.

This could be achieved (one day) by our community convening with others, and agreeing to boycott the ATA and BTA (as examples), thereby starving them of funding.

Anyway, you catch my drift. Tinnitus Talk could become something much larger than it is right now, but it's hard because we haven't all got our sh*t together at the same time.

@Damocles, I hope your future gives you the stable career soon.

What you wrote is so true. And it is happening. Tinnitus Talk is growing and is now here in the USA as a charitable organization. @Hazel and @Markku work so hard without any paycheck. Those who are able should donate to give thanks for their efforts for tinnitus patients.

Thank you for supporting Tinnitus Talk even when things are tight for you financially. That is sure to mean so much. You helped and made a difference.

 

[Ed209]

@Damocles, I hope your future gives you the stable career soon.

What you wrote is so true. And it is happening. Tinnitus Talk is growing and is now here in the USA as a charitable organization. @Hazel and @Markku work so hard without any paycheck. Those who are able should donate to give thanks for their efforts for tinnitus patients.

Thank you for supporting Tinnitus Talk even when things are tight for you financially. That is sure to mean so much. You helped and made a difference.

You are a shining example, @Starthrower, of what a charitable person is.

 

[Starthrower]

You are a shining example, @Starthrower, of what a charitable person is.

@Ed209, thank you so much. You are also a generous person and give such great advice to people on Tinnitus Talk.

Awareness and donations to Tinnitus Talk are so important. A support site is one thing. An actual organization, for example, Tinnitus Hub/Talk, would not be here for tinnitus patients without donation support.

If the founders of Tinnitus Talk decided to quit, we would have nothing or nowhere to turn to for help.

I so wish those who have the financial means to donate would do so. It seems so many that do not have the money will give and go without just to help Tinnitus Talk/Talk exist and I personally want to hug each one.

I have been gone because of an illness for the past year. I couldn't even get to my computer or out of bed for a long time. I missed being normal, health wise. But I am back and feeling better.

We each have our own health issues to battle along with tinnitus.

I caught up recently and was so amazed @Hazel traveled all the way to Florida on her own money to attend a tinnitus conference in Florida. Sorry I forgot the name. And @Markku is still here helping Tinnitus Talk survive on such limited funds.

I just care about people who offer so much honesty, integrity and time to our tinnitus community.

 

[gameover]

Since getting tinnitus in 2015, I have never seen the community raise more than a couple of thousand pounds from some guy running a marathon. It starts with us, not others.

Show me a community of sufferers of any disease that would do that, maybe except some isolated examples of some rich (and famous) folks like, I dunno, Michael J. Fox.

What do you expect us to do? Throw money after what? Evidently the numbers of severe tinnitus and hyperacusis sufferers are small. Mild "sufferers" are aplenty, but so what? Why would you expect them to care much?

I can spare a few bucks here and there, but will I give several thousands for some academic research somewhere? No. Because my survival and the survival of my family are in huge danger now. Especially in the U.S., where I have no shot on disability or anything to help me survive.

 

[Cmspgran]

Show me a community of sufferers of any disease that would do that, maybe except some isolated examples of some rich (and famous) folks like, I dunno, Michael J. Fox.

What do you expect us to do? Throw money after what? Evidently the numbers of severe tinnitus and hyperacusis sufferers are small. Mild "sufferers" are aplenty, but so what? Why would you expect them to care much?

I can spare a few bucks here and there, but will I give several thousands for some academic research somewhere? No. Because my survival and the survival of my family are in huge danger now. Especially in the U.S., where I have no shot on disability or anything to help me survive.

I can totally relate to these feelings @gameover. It's a total survival mode for me right now. I don't have a family to support (a tragic and beneficial thing in equal doses). I'm 41 in a few days. I recently started a new career. I'm hanging on for dear life. I'm hoping the key to all our problems is the Susan Shore device. I will be flying out to America to buy it once available if I'm still as bad in 12 months' time.

I agree, the whole fundraising issue is a waste of time. Who would the funding go to? There isn't enough catastrophic sufferers to care, the majority of visitors on Tinnitus Talk turn up from a rock concert, go through 6-12 months of tinnitus distress before it fades/they habituate, and are never to be seen again. The reality is, the regulars, especially those who have been here 5+ years are in the vast minority from what I can witness.

 

[Nick47]

Show me a community of sufferers of any disease that would do that, maybe except some isolated examples of some rich (and famous) folks like, I dunno, Michael J. Fox.

What do you expect us to do? Throw money after what? Evidently the numbers of severe tinnitus and hyperacusis sufferers are small. Mild "sufferers" are aplenty, but so what? Why would you expect them to care much?

I can spare a few bucks here and there, but will I give several thousands for some academic research somewhere? No. Because my survival and the survival of my family are in huge danger now. Especially in the U.S., where I have no shot on disability or anything to help me survive.

I can totally relate to these feelings @gameover. It's a total survival mode for me right now. I don't have a family to support (a tragic and beneficial thing in equal doses). I'm 41 in a few days. I recently started a new career. I'm hanging on for dear life. I'm hoping the key to all our problems is the Susan Shore device. I will be flying out to America to buy it once available if I'm still as bad in 12 months' time.

I agree, the whole fundraising issue is a waste of time. Who would the funding go to? There isn't enough catastrophic sufferers to care, the majority of visitors on Tinnitus Talk turn up from a rock concert, go through 6-12 months of tinnitus distress before it fades/they habituate, and are never to be seen again. The reality is, the regulars, especially those who have been here 5+ years are in the vast minority from what I can witness.

You've just reinforced my point, @Cmspgran & @gameover.

"It starts with us, not others."