[Danny Boy Memorial Fund] In Loving Memory of Danny Boy

[Jazzer]

Once all medical causes are ruled out by ENT and MRI and hearing test have been carried out, then that is about as good as it gets and basically all that is left is to learn to live with it unless hearing aids are needed.

CBT and TRT can help with mind over matter and coping skills but it will not magically stop your tinnitus.

Some people cope and get by without much distress but for some people it is mental torture and a life struggle just to get through each day and need support from every care giver, from family to the medical profession, and mental support through meds and counselling.

I know from what I have to listen to everyday that tinnitus is enough to push someone over the edge and many more people on here have it the same.

Even a mild form of tinnitus can be enough to cause them daily grief and struggle to cope as much as severe tinnitus.

We all hope one day more help will be available worldwide and not just for the money folk.

Tinnitus changes many lives and when you have to push even harder to enjoy life, some people learn to struggle on by, but for some people life seems too hard to live for.

With how emotionally draining tinnitus is, trying to work, finding a partner, getting married, having children, being a parent and provider in the rat race of life can be difficult and sleep deprivation on top of it all adds to the misery.

Something more needs to be done as papering over the cracks in 2018 is not good enough.

Helping to raise money and awareness can only be a good thing and that goes for any health issue worldwide.

A Tinnitus Talk / Hub team will be out in force at the BTA Expo in September and hope it's the first of many more to come. That is brilliant news for 2018. Tinnitus Week 2019 will be amazing.

Progress is happening and it's amazing what people can do when they join forces and not let tinnitus and hyperacusis get swept under the carpet as now it's time to get better treatment and recognition for both conditions worldwide.

love glynis

Excellent summary Glynis
Dave xx

 

[Phil-O]

I am very sorry and saddened to hear this news. Danny was always ready to share his tinnitus knowledge and experience supporting other members. Condolences to his family. Phil

 

[Emperor-Drax]

This is awful. Poor bugger. I haven't followed this thread so I don't know what his cause of death was but he was obviously suffering. And I have a weird way of thinking of people born in the 1990s as still being just kids, so this is a really big downer.

Any instructions on how to make a donation? I'd be happy to contribute.

EDIT: never mind. Found the way. Donated.

 

[swc5150]

RIP buddy, you'll be missed. Such awful news

 

[glynis]

I hope one day Danny's daughter gets to know just how much a wonderful daddy she had and how much he loved her and was his world. I know he will be looking down from heaven and wishing she was in his arms.

I hope she finds happiness in life and gets to remember her so much loved daddy (Danny Boy).

We will never forget you xxx

 

[valeri]

I'm just trying to understand why so few want to donate to tinnitus research.

Ed maybe you should have picked a "proper research" to fund and not BTA!

They can say whatever they want but the cure is not coming from either them or ATA.

Few years ago, when Prof Moore's research on alternative to Retigabine was in the game, I contacted ATA and asked why aren't they jumping on board to help that particular research, which I think makes a lot of sense if your "purpose of existence" is to help tinnitus sufferers!

You know what the answer was???

They are not allowed (by some internal regulation) to contact researchers but researcherss have to contact them and apply for grants!!!!!

How's that for wanting to help us????

I don't believe any other association operates in this manner.

They are happy to waste funds on useless projects given to some PhD wannabe but are not interested in research that already has some foundation and is actually likely to be the holy grail we are waiting for.

BTA, for example, wasted (and I truly think "wasted") over £70.000 to find out the cost of tinnitus on UK health system!

Do I, as somebody whose life has been destroyed, really care how much I cost the system!

NO! I want "system" to provide me with something to reduce the noise so I can go on with my life! Just like they do for people with other illnesses.

How about research into how CBT can help tinnitus related insomnia!!!

It's a complete joke what those people are doing and how they operate!

I understand limited funds and all that but the least these associations could have done, in decades that they've been around, is to make sure that everyone heard word "tinnitus"!

I bet you that at least 90% of general population has never heard of tinnitus and it's probably the same for people on this board (I didn't).

If you ask my 17-year-old if she's heard of Alzheimer's she will say yes. Tinnitus? Only because I have it.

5-10 years ago not many knew about Alzheimer's, Parkinson's, MS... Now general population at least heard/saw these "words" on TV or internet!

Why? Because there are associations behind those people who are doing their job!

Tinnitus is not some rare tropical disease or 1 in a million syndrome!

Our lovely associations and their "you don't feel your socks" theory has resulted in tinnitus being turned into something not worth a mention or being of any significance in person's life, let alone being capable to cause suicide (NO WAY!!!).

Yet they will without any shame take money raised on behalf of suicide victims but will continue to fail to at least acknowledge the cause of death (it's always something else).

This is the only reason I (and believe me many others) refuse to donate to this fundraiser.

I personally admire your effort and enthusiasm but I wish this fundraiser was directed to something that could genuinely help us.

When that happens I will be the first one to help, until then I'll sit back and wait.

Sorry for the long post!

 

[Spiral]

Danny Boy,

I didn't really know you or have many conversations with you. However, I do know how well regarded and missed you are on this board. I saw many of your posts. It is a small community and news like this hits us hard.

We were always still like two brothers with the same disease. I know your pain. Whatever happened, I pray you didn't force your hand and take your own life.

May you be in a better place, rest in peace brother.

Regards,
-Spiral

 

[JohnAdams]

I hope one day Danny's daughter gets to know just how much a wonderful daddy she had and how much he loved her and was his world. I know he will be looking down from heaven and wishing she was in his arms.

I hope she finds happiness in life and gets to remember her so much loved daddy (Danny Boy).

We will never forget you xxx

He had a daughter... I hope her the best and understanding.

 

[Ed209]

I personally admire your effort and enthusiasm but I wish this fundraiser was directed to something that could genuinely help us.

All donors will be choosing, democratically, where the money goes. I honestly feel like banging my head against a brickwall!!! In my opinion, the tinnitus community works against itself and lacks the motivation to do anything real.

All I see is moaning and a pathetic level of fundraising right across the board. It really cannot be any simpler. The easiest, and realistically, the best way, to raise money fast and effectively, is via gofundme or JustGiving. It's not as simple as picking a lab and then wiring up multiple donors' money to some offshore account somewhere! What the BTA can do, is work with us, to find a suitable beneficiary that we can all agree on as being the best candidate for Danny's Fund. This money will NOT be spent willy nilly.

Based on what I've witnessed over the years, however, I don't think it matters what the fund is for, as the end result would be exactly the same: a general lack of engagement and loads of complaining - and with this attitude - we'll never get anywhere. Just look how hard it was to raise money for this site! It was like extracting blood from a stone. Most people don't seem to care about giving money when the word tinnitus is involved; especially sufferers (based on statistics).

If anyone else wants to set up another fund dedicated to research (like what we've got here) then by all means do so! I'd love to see more advocacy for this cause and for more people to get involved instead of just talking about what should be done. I'm tired of all the talk; it's time for action.

PS: We're extremely grateful to every single donor who has participated thus far. Without people like you in the world there would be no chance of a treatment or a cure. We can't thank you all enough.

 

[valeri]

All donors will be choosing, democratically, where the money goes. I honestly feel like banging my head against a brickwall!!! In my opinion, the tinnitus community works against itself and lacks the motivation to do anything real.

All I see is moaning and a pathetic level of fundraising right across the board. It really cannot be any simpler. The easiest, and realistically, the best way, to raise money fast and effectively, is via gofundme or JustGiving. It's not as simple as picking a lab and then wiring up multiple donors' money to some offshore account somewhere! What the BTA can do, is work with us, to find a suitable beneficiary that we can all agree on as being the best candidate for Danny's Fund. This money will NOT be spent willy nilly.

Based on what I've witnessed over the years, however, I don't think it matters what the fund is for, as the end result would be exactly the same: a general lack of engagement and loads of complaining - and with this attitude - we'll never get anywhere. Just look how hard it was to raise money for this site! It was like extracting blood from a stone. Most people don't seem to care about giving money when the word tinnitus is involved; especially sufferers (based on statistics).

If anyone else wants to set up another fund dedicated to research (like what we've got here) then by all means do so! I'd love to see more advocacy for this cause and for more people to get involved instead of just talking about what should be done. I'm tired of all the talk; it's time for action.

PS: We're extremely grateful to every single donor who has participated thus far. Without people like you in the world there would be no chance of a treatment or a cure. We can't thank you all enough.

Ed I agree with every word you said!
Been there done that so I truly understand your frustration.

Today I drugged myself (just to survive the day) so badly that I can barely put one foot in front of other so forgive my lack of concentration and memory.

Was I clear enough in saying that we lack much needed support from the very organisations that exist because of us?

Do you see, if you want to be honest, how they actually work against us?

Why? I think I know but it still makes me wonder why!

All I know is that the change needs to happen on some higher level than us.

Do we need another "body" to truly represent our needs, communicate with governments, researchers, defence department... maybe!

Is this possible! Probably but I'm aware it wouldn't be an easy process.

One thing I know is that there are many many smart people on this board who could possibly make this happen.

Somebody mentioned someone donating $20M to tinnitus? To who? For what?
Does this person have sooooo much money he doesn't care where his money went?

What about the recent anonymous donation to some ear clinic? What has been done with that money?

That's $40M unaccounted for!!!!

Outrageous if you ask me!

Do you have any knowledge how other organisations for illnesses operate????

Do they, like ATA, choose to sit back and twirl they thumbs while a possible cure is out there? Only a phone call away to at least see what an experienced researcher has to offer?

I don't think it's the lack of interest but rather a lack of proper guidance and direction.

Until that changes nothing will change.

We don't need many different initiatives but one BIG ONE!

 

[Greg Sacramento]

@Ed209,

For what it's worth, I'm truly grateful to you for your compassionate desire to make this funding successful in the name of Danny who we bless.

I have written to Harvard, MIT, Dartmouth, and a couple of other colleges in New Hampshire. Together just these colleges have 5.4 billion in medical giving research funds. I contacted these schools and asked it they would place money into the tinnitus research space.

The problem that was expressed is that the healthcare community won't spend the time to develop teams to treat. To healthcare in the USA it's about profit and many insurance providers have limitations on treatments for tinnitus. I did get a positive note by them saying that my requests would be placed under review.

Have you thought about asking the BTA to use Danny's funds to hire a professional medical fund raiser to contact colleges and universities around the globe that have medical research giving funds and trusts? Maybe they can 10X, 100X or 1000X the amount of money that is raised in the name of Danny. Danny's fund would probably need to have 20,000 for this venture. Maybe the BTA and ATA can match our giving.

Also maybe some funding received can help those in need of tinnitus medical care. With this maybe Wells Fargo, B of A and the Banks of London would donate.

 

[valeri]

I think engaging people who truly suffer with tinnitus is our best bet.

Only someone who walks this path will understand the urgency to do something.

I don't think such person would waste either time or money!

Anyone else, even someone with mild tinnitus, would not do any better than what we have now!

 

[Ed209]

I think engaging people who truly suffer with tinnitus is our best bet.

Only someone who walks this path will understand the urgency to do something.

I don't think such person would waste either time or money!

Anyone else, even someone with mild tinnitus, would not do any better than what we have now!

People don't realise the power they have. If everybody was motivated enough, and committed, we could raise a huge amount of money and then decide what to do with it. And not only that, but lobby governments and health organisations for more help.

There is something that I can't help but ponder, and that is how often do you hear people who are donating to cancer research say: what's the point? Nothing will come of it anyway? People donate because they know it's the only hope of solving it. Everyone is aware of the significant challenges involved, and also know how unlikely it is to be cured in our lifetime. However, they donate anyway, because they know it's the only way it can be wiped from the planet.

With tinnitus, nobody seems to make that leap. People would rather moan about the lack of research than contribute towards it. It's absolutely bonkers in my opinion.

We can't have it both ways: that is to expect a treatment, or a cure, without so much as attempting to donate a penny, or to even share any fundraising campaigns.

We have to affect the change we wish to see. Staying silent, or only discussing these things online, is just not enough. And I do feel your pain, Val. I can feel your frustration, but nothing will change unless we all act together. You ever seen A Bugs Life? We are the ants.

 

[Hazel]

People don't realise the power they have. If everybody was motivated enough, and committed, we could raise a huge amount of money and then decide what to do with it. And not only that, but lobby governments and health organisations for more help.

There is something that I can't help but ponder, and that is how often do you hear people who are donating to cancer research say: what's the point? Nothing will come of it anyway? People donate because they know it's the only hope of solving it. Everyone is aware of the significant challenges involved, and also know how unlikely it is to be cured in our lifetime. However, they donate anyway, because they know it's the only way it can be wiped from the planet.

With tinnitus, nobody seems to make that leap. People would rather moan about the lack of research than contribute towards it. It's absolutely bonkers in my opinion.

We can't have it both ways: that is to expect a treatment, or a cure, without so much as attempting to donate a penny, or to even share any fundraising campaigns.

We have to affect the change we wish to see. Staying silent, or only discussing these things online, is just not enough. And I do feel your pain, Val. I can feel your frustration, but nothing will change unless we all act together. You ever seen A Bugs Life? We are the ants.

Ed, I couldn't agree more, and thanks for your tireless advocacy. I know it must be infuriating at times, but you're a true inspiration. I will donate again later this weekend.

I think engaging people who truly suffer with tinnitus is our best bet.

Only someone who walks this path will understand the urgency to do something.

I don't think such person would waste either time or money!

Anyone else, even someone with mild tinnitus, would not do any better than what we have now!

Valeri, while I can't really judge the validity of your arguments against certain tinnitus organisations, from what I've seen they do not seem as incapable as you accuse them of being. Raising awareness among the general public is actually a very hard thing to accomplish. As is funding the right research. Especially with very limited staff and resources available, and strict regulations around such matters.

I agree with Ed that nothing is easier than screaming from the sidelines that things suck. That's a sure way to accomplish absolutely nothing. At least with this fundraiser we're doing something real; there's a chance of having an impact.

Plus, as Ed pointed out, the allotment of the funds will be determined democratically by those who donated, i.e. us! So there's absolutely no valid reason imo for not donating.

 

[glynis]

@Ed209,
Will this be one big donation or could it be a long-term one going for research?

I would like to use all my connections to get audiologists to join in long-term raising awareness and donating to research.

love glynis

 

[Ed209]

@Ed209,
Will this be one big donation or could it be a long-term one going for research?

I would like to use all my connections to get audiologists to join in long-term raising awareness and donating to research.

love glynis

Let's try and make as much money as possible for the gofundme campaign, and then as far as I know, there's going to be a longterm 'in memory fund' for Daniel at the BTA. Contributions to this can go on indefinitely.

Thanks for joining the fight, Glynis. Your support has been invaluable and so has everybody else's who's helped out.

 

[jimH]

Ed, thanks for your tireless advocacy. I know it must be infuriating at times, but you're a true inspiration. I will donate again later this weekend.

I whole heartedly agree with that statement. A number of us have already donated more than once and will continue to do so.

So, @Ed209, don't be discouraged! We'll accomplish the mission. It's just going to take longer than we previously expected.

 

[Ed209]

I whole heartedly agree with that statement. A number of us have already donated more than once and will continue to do so.

So, @Ed209, don't be discouraged! We'll accomplish the mission. It's just going to take longer than we previously expected.

Jim, you are an absolute inspiration. Like I said in my message 'thank you' just doesn't seem to cut it.

 

[valeri]

People don't realise the power they have. If everybody was motivated enough, and committed, we could raise a huge amount of money and then decide what to do with it. And not only that, but lobby governments and health organisations for more help.

There is something that I can't help but ponder, and that is how often do you hear people who are donating to cancer research say: what's the point? Nothing will come of it anyway? People donate because they know it's the only hope of solving it. Everyone is aware of the significant challenges involved, and also know how unlikely it is to be cured in our lifetime. However, they donate anyway, because they know it's the only way it can be wiped from the planet.

With tinnitus, nobody seems to make that leap. People would rather moan about the lack of research than contribute towards it. It's absolutely bonkers in my opinion.

We can't have it both ways: that is to expect a treatment, or a cure, without so much as attempting to donate a penny, or to even share any fundraising campaigns.

We have to affect the change we wish to see. Staying silent, or only discussing these things online, is just not enough. And I do feel your pain, Val. I can feel your frustration, but nothing will change unless we all act together. You ever seen A Bugs Life? We are the ants.

It's hard to compare tinnitus and cancer. Or for that fact any other illness.

No other disease is as "sexy" as cancer or will ever be.

Cancer research is a big business, a golden chicken that brings in billions of dollars!
Just a mention of word cancer will send shivers down ones spine and the first though will be....death!!!!

And even though we know that many forms are no longer a death sentence it still continues to evoke fear.

Just imagine if cancer associations chose to hide the ugly side of cancer, if they only allowed happy stories to be heard/seen.... do you think research into cancer would be where they are today?

Surely not!

Problem with tinnitus... if you have something, for decades now, presented as not significant or in any was disruptive to persons life how do you expect "the world" to see it any differently?

We need this sugar coating to stop! We need the world to see tinnitus for what it really can be! We need the bad and ugly out in public!

We need stories like Danny's to be acknowledged by tinnitus associations!

We need stories like Danny's to be used for good, more funding, more research!

We need ATA and BTA to stop saying there are ways to treat tinnitus because none of the "bandaid" approaches they promote are treatments!

Few years ago I just asked a simple question: what if every person with tinnitus donated just $1????

Just $1!!!!

Maybe we can try but before that tinnitus needs to be presented without any frills!

 

[valeri]

Valeri, while I can't really judge the validity of your arguments against certain tinnitus organisations, from what I've seen they do not seem as incapable as you accuse them of being.

Unfortunately the mere existence of this thread is a proof of their "capability"!

 

[valeri]

I agree with Ed that nothing is easier than screaming from the sidelines that things suck.

I agree with both of you but when so much has been tried and years later things still suck there's nothing left but scream!

 

[attheedgeofscience]

So... having read this thread periodically and gotten an understanding of the themes that are emerging from the messages, I wanted – as a former advocate – to weigh in with a few words (as I think there is... ahem... a need for that):

• It more than well known that galvanizing the tinnitus community is next to impossible (be it money or even a rating via the social media). So forget about it! And remember as Einstein once said: "Insanity is doing the same thing over and over again, and expecting a different result". So again: stop doing things that don't work!
• So in light of the above premise, what can you do? Well, you can try to leverage the greater good using something smaller. Supporting the Frontiers Topic on tinnitus heterogeneity is a perfect example of that (and a project I have personally spent +100 hours supporting in the background). As another example, a couple of months ago, I wrote TRI with input on how Google had used artificial intelligence to analyze patient data in order to predict whether a patient in a hospital setting will have a relapse (or not) in the next 48 hours. This was presented at the Google I/O 2018 Summit (there are two papers out on it as well). As it happens, Google is partnering with a whole range of academics within the field of health sciences and it is not inconceivable that studying data points could provide an interesting angle to tinnitus research (because of the heterogeneity of the condition – something I had a dialogue with TRI about).
• To become a successful advocate requires being opportunistic as well as keeping up-to-date with what is happening in the world. And to know what is happening around you requires a certain degree of knowledge and a network of people that can supply information. If you don't have that, you are "not in the loop" and you will never get the necessary "advance notice" about events that matter. And without that, you cannot influence (influencer = advocate). Being online 24/7 on TinnitusTalk is not going to open your eyes to stuff that matters.

Hopefully, the above will provide food for thought (although I expect it to mostly fall on deaf ears – I mean, let's be honest: why would the tinnitus community suddenly change, right?).

Good luck – you will need it...

 

[Ed209]

To become a successful advocate requires being opportunistic as well as keeping up-to-date with what is happening in the world. And to know what is happening around you requires a certain degree of knowledge and a network of people that can supply information. If you don't have that, you are "not in the loop" and you will never get the necessary "advance notice" about events that matter. And without that, you cannot influence (influencer = advocate). Being online 24/7 on TinnitusTalk is not going to open your eyes to stuff that matters.

Jesus Christ, can you climb any further up your own arse! Your entire post reeks of arrogance. For your information, I have a network of incredibly connected, and powerful people, in my inner circle. It's not something I like to openly preach about on here though.

I'm aware of everything you have done for the cause which is remarkable, and I can't take that away from you. At least you have contributed. However, the way you come across sometimes is unbelievably narcissistic. Maybe tone down the smugness a touch and show more of a relatable, human side, and you might achieve even more.

I also noticed that you never mentioned Danny once; which is the whole point to this. Maybe I shouldn't even be posting this, but I like to speak my mind. I came back to help. If you can assist then please do, otherwise, why bother posting?

 

[attheedgeofscience]

For your information, I have a network of incredibly connected, and powerful people, in my inner circle.

Yeah sure... and yet the funding is an incredibly meager £2700:

What does that tell you??? The self-deceit knows no boundaries within the tinnitus community, does it?

Jesus Christ, can you climb any further up your own arse! Your entire post reeks of arrogance.

What can I say... except that: the truth isn't always convenient...

 

[Ed209]

Yeah sure... and yet the funding is an incredibly meager £2700:

And your contribution is what exactly? Why are you even here? I find you quite hilarious at times if I'm being honest. It's like your ego needs stroking every now and then. I sense that everything you try to achieve is for some kind of personal fame and glory; you couldn't give a shit about anyone else other than yourself.

I remember @Zug once mentioned that you got all excited because a 'famous person' had interacted with you on your Facebook page, or something along those lines. But it was Zug himself. It's all a bit pathetic really. Your quest for some kind of social status, or appearing to be superior, is so pathetic it's cringeworthy.

You can kindly fuck off now if you don't want to help. Mind the door though, I don't want you hitting your head on the way out.

 

[just1morething]

I thought the door spanks his arse on the way out, but he could hit his head on the door if he forgets to open it.

 

[glynis]

@attheedgeofscience,
You pop up and just create a bad smell after being such a nice person giving help.

You have shown no kindness regarding Daniel's memory whom was well loved and respected.

You gave @Michael Leigh trouble and another member no respect either.

Your respect on here is lowering and I hope you get back to your better self.

If you would like to donate that would be lovely and I'm sure you and Danny Boy have corresponded in the past and after this a long term fund in his name with the BTA is possibly set up in his memory.

I hope you do behave as I will be keeping a close eye on you from now on.

love Glynis

 

[Starthrower]

Yeah sure... and yet the funding is an incredibly meager £2700

A meager amount? This money came from the heart and soul of many members/family and friends here. And most of them, unlike yourself obviously, do not live a life of wealth, where for them, giving up a few dollars, means not having one meal for a day.

I am proud of each and every dollar donated towards Danny's fund with the BTA.

When you match this donation you can have an opinion.

What does that tell you??? The self-deceit knows no boundaries within the tinnitus community, does it?

Huh?

What can I say... except that: the truth isn't always convenient...

Yeah. I was told that "truth" back in 2006 or so. "The ATA no longer had an interest in the FDL Tinnitus Assistance program." They did not care about helping people with tinnitus.

I hope you do behave as I will be keeping a close eye on you from now on.

love Glynis

Yes, we have a new sheriff in this town and she has many many deputies to help her out!

 

[Jazzer]

I can see that we have a massive problem in getting the extent of the suffering that Tinnitus does actually cause to its sufferers appreciated by the general public.
They really have no idea whatsoever what absolute 'up front and personal' this hell we suffer interminably is.

I'll just relate an incident that happened to me at a family birthday party a couple of years ago.

The birthday girl was about to give a demonstration of her new found prowess as a Salsa dancer within a dancing troup.
The music was screaming at my damaged ears.
I adjourned to the lobby outside the main hall.
Feeling rather miffed, the birthday girl came out to ask, 'why are you out here missing my birthday demonstration?'

I told her that it was all far too loud for me.

"Oh dear - so we're sitting out here nursing our Tinnitus are we?"

I was both, distraught at the cruelty, and fuming at the crass ignorance.

The important thing to get across to you is this - that young lady is not normally a callous girl.
Her husband died of SADS - Sudden Adult Death Syndrome - a peculiar heart condition that killed him in his thirties.
She is a fundraiser for this organisation, and a caring girl.
She was simply totally ignorant of this disease, like almost everybody else who doesn't have it.

Don't worry - I educated her real quick, and referred to her simply as one one aspect of her anatomy.
I was breathing fire !!

Other people have said to me "well if I had it I would just cope - I know I would!"

I would like to see some video interviews, like the one of that tragic French lady, who went to Switzerland for euthanasia, aired on prime time TV, so that the general public might start to think about us, and might start to care about us.

Tinnitus is still seen as just a bit of a joke.
We will not generate the necessary funds until this popular perception is destroyed by the truth of our suffering.

 

[Ed209]

"Oh dear - so we're sitting out here nursing our Tinnitus are we?"

This is one of the most hurtful things that can happen. It happened to me a couple of times early on in my tinnitus journey and it cut like a knife. That is the ignorance of people though. Rest assured the ones in question got a very quick education on the subject and they never said anything bad again.

I've been quite fortunate as most have been understanding.