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

[Ash04]

This is absolutely heartbreaking.

I don't have any type of social media, but I shared the link with several people via text message and asked that those people donate if possible and share the link themselves.

 

[Lex]

I never got to talk to Danny but I read most of his posts, which are informative. He was knowledgeable and kind, so it's heartbreaking that he suffered a lot.

Rest in peace, Danny.

 

[Richard zurowski]

@Ed209 hi.

My friends and family will pay into my bank account and then I'll pay it in by PayPal. Thanks Ed.

 

[Lasse S]

I did not know Danny Boy personally, but I have spent many hours reading his informative posts here on Tinnitus Talk.

It is very tragic. May he rest in peace.

 

[linearb]

Shine on you crazy diamond, you're missed.

 

[J.Hartog]

So, if we all care so deeply then let's supercharge our efforts. If all the viewers to this thread had donated just a £1 each we'd have likely reached our target by now. I set that £10k figure as a rudimentary goal; I think we'd all love to see us set a new precedent in terms of what a tinnitus fundraiser can do. Success breeds success. And most importantly of all, let's do it for Danny!!

Again sorry for my language but it's baffling to me that not more people have donated. I am basically crippled due to a shitstorm I am in at the moment in my life and don't have a lot of money but I still donated.

If you can't spare at least 1 or a few pounds when you are dealing with tinnitus or are saddened by Danny's death you can just go F yourself.

Sorry... This again is MY personal view.

 

[TheDanishGirl]

Again sorry for my language but it's baffling to me that not more people have donated. I am basically crippled due to a shitstorm I am in at the moment in my life and don't have a lot of money but I still donated.

If you can't spare at least 1 or a few pounds when you are dealing with tinnitus or are saddened by Danny's death you can just go F yourself.

Sorry... This again is MY personal view.

My unpopular opinion: everybody can spare 1 pound, EVERYBODY!

No matter how poor they are.

 

[jimH]

I am basically crippled due to a shitstorm I am in at the moment in my life and don't have a lot of money but I still donated.

Thanks for donating even though you're going through such a difficult time and have little money...

 

[Ed209]

My unpopular opinion: everybody can spare 1 pound, EVERYBODY!

No matter how poor they are.

I honestly think @jimH hit the nail on the head. I think there is a stigma attached to donating £1, because it's seen as inferior or embarrassing. Especially if you feel you could give more but you're short on money. The end result is that nothing gets given. A donation is a donation and it doesn't matter what the amount is. The important thing is that you have given something.

Can someone please do me a favour and be the first to donate £1? Let's break this stigma and let the floodgates open. It can be done anonymously if you want.

 

[glynis]

@Ed209,
I have already donated but tried to make a £1 donation for you but it comes up with an error as the minimum donation must be £5.

love glynis

 

[Ed209]

@Ed209,
I have already donated but tried to make a £1 donation for you but it comes up with an error as the minimum donation must be £5.

love glynis

Well let's make it £5 then folks. Who's up for it?

Thanks for that Glynis.

 

[Greg Sacramento]

Most may be able to donate, but there are reasons why some compassionate ones can't besides being in debt due to having lost a job and medical expenses from a disease. Some may have family, creditor or court legal restrictions or watch guarding due to expense of healthcare or another private matter.

I made a donation and I have made other donations. I have given well over half of my lifetime salary and income to causes. Now any contribution that I make needs approval of others. Contributions made are not in my name - but in the name of a trust. There are other members of this trust family who are over 60 years old. If nursing home expenses and medical expenses are needed it could cost millions a year.

Let's not have others feel guilty as there may be reasons why they can't donate.

 

[glynis]

@Ed209,
I just think some people don't want to commit or maybe it's due to not wanting to give their real identity details out on bank cards.

Not a lot of members donate and become Tinnitus Talk Benefactors either, but it's got to be their decision I'm afraid.

@Markku,
Maybe this could be a pinned thread in the Support category as I think more member traffic goes through it and more people would see the thread.

 

[Ed209]

Most may be able to donate, but there are reasons why some compassionate ones can't besides being in debt due to having lost a job and medical expenses from a disease. Some may have family, creditor or court legal restrictions or watch guarding due to expense of healthcare or another private matter.

I made a donation and I have made other donations. I have given well over half of my lifetime salary and income to causes. Now any contribution that I make needs approval of others. Contributions made are not in my name - but in the name of a trust. There are other members of this trust family who are over 60 years old. If nursing home expenses and medical expenses are needed it could cost millions a year.

Let's not have others feel guilty as there may be reasons why they can't donate.

Greg, that is far from my intention. I will restate what I said earlier that there is absolutely no guilt in not donating, at all. If the situation one's in stops them from doing so then it's absolutely, 100%, fine.

However, we are getting thousands of views to this thread and the maximum number that have donated, from here, can only be around 70. That's maximum. It's a tiny fraction of a percent. I'd bet that more nonsufferers have contributed to this than actual sufferers and I just can't figure this out. Why aren't we falling over each other to help our own cause?

I've noted many cancer research campaigns going above £100,000, and quite frequently. Is tinnitus not as bad as we think? Help me out people. Why is this condition one of the worst in the world for attracting donations? If we want treatments, and/or a cure, then we need to be far more pro-active

 

[Ed209]

Not a lot of members donate and become Tinnitus Talk Benefactors either, but it's got to be their decision I'm afraid.

I know, Glynis, and you're absolutely right. I'm just trying to understand why so few want to donate to tinnitus research. Everyone has the right to do as they wish and I'm fully behind that, but is no one thinking the same as me? Why is tinnitus so hard to fund?

I know it sounds like a rant, but it's more of a big why? I've spent the last few days contacting tinnitus charities, and groups, so they could share our campaign. Most didn't want to. To me this is another moment where I question if we're all after the same goal?

All I can say is that I now fully understand why there aren't any treatments yet. No one seems to care about tinnitus, and none moreso than tinnitus sufferers themselves. I know this sounds harsh, but I'm just trying to be honest about how I feel. I mean no disrespect to anyone.

 

[Jazzer]

"Giving" - supporting important causes, charities, with our money our time and our efforts, is a crucial thing, and is a very personal thing.

I happen to do it all the time, and as much as I possibly can.

I have frequently given something substantial, when I absolutely could not afford to.

I personally see the act of 'badgering' to be distasteful.

Perhaps I am over sensitive, I really don't know.

However, that was the point I was trying to make, probably ineffectively.

 

[Markku]

@Markku,
Maybe this could be a pinned thread in the Support category as I think more member traffic goes through it and more people would see the thread.

I put up a little memorial notice / link at the top of the site. I'll keep it there for a while (until I've concluded how much more traffic it brings to the thread vs. before the notice).

 

[glynis]

@Ed209,
I think habituation pays a big part and that's what most members want and don't want to think about their future long-term with tinnitus or research and they want to think their tinnitus will go away.

We know the truth and for some it's a long-term challenge and we need a cure.

I also think it's because Tinnitus Talk is a worldwide community and a lot of people feel alone and they don't want to mix, but instead just read the forum posts.

love glynis

 

[Ed209]

I personally see the act of 'badgering' to be distasteful.

Not badgering, Dave. Just trying to understand why there isn't a single tinnitus charity in the top 1000. Maybe people can't hear my tone of voice via text. I want to make this abundantly clear that you should only donate if you want to.

My last two posts are more me trying to understand why no one cares about our own condition. Not even in strictly monetary terms, but other organisations not sharing things either. Is it not for the greater good? It's all a huge mystery to me.

 

[Jazzer]

People without tinnitus actually don't care.

They have no conception of what it means to have this wretched thing demanding our attention throughout every day of our lives.

It is a bit of a joke to them, whereas it is one of the most devastating things that can possibly happen to anybody on this planet.

 

[Greg Sacramento]

@Ed209, I think that you are a very compassionate person as well as the other mods and I understand and honor your thoughts.

I have more education in finance/economics and healthcare systems than I do in biology. I think when some view the fund they connect it to medical associations. Not being the case with the BTA, but many associations use up to 88% of donations for management and balance sheet expense where the money isn't being used for research.

I understand that all BTA donations - 100% of Danny's fund will go to research.

I posted a link yesterday where the Silicon Valley rich donate to funds for a write off. This money is not used for community or medical needs and because of this community associations are folding. I also mentioned the Harvard's fund that in total have trillions of dollars that could be used for a promising treatment.

Last year I was involved with another fund in writing letters to some rich and powerful people to make a contribution to the tinnitus cause. I received four replies and three mentioned that most with tinnitus have it mildly or they can habituate.

Within the hospital where I worked, almost none of the medical personnel would donate to a medical association for reasons mentioned above. They did donate in volumes to families that lost a loved one. Many also donate and give community time to those in need of medical and social needs.

I think that your effort with this fundraiser is remarkable as it shows honor to our friend and to our being.

 

[Ed209]

It is a bit of a joke to them, whereas it is one of the most devastating things that can possibly happen to anybody on this planet.

That's the part I struggle with. I know how bad it is, but then why aren't there more campaigns and projects to raise money to find a treatment? The stats are shocking and really do suggest that no one cares.

I want us to help ourselves by doing things to forward the cause. The lethargy is staggering though. I don't want this thread to turn sour because I honestly have good intentions.

I never want to see another thread where someone is suffering unbelievable horrors. I never want to see any more tears relating to this condition, and I definitely, never, ever, want to see another suicide. That's where I'm trying to come from.

12,000 views (that's just from here, there are thousands more via Facebook) and around 70 donations. Let that sink in. I wish the tinnitus community would rise up and kick the shit out of this condition once and for all, but it will never happen at this pace. It seems like a lost cause.

 

[Rubenslash]

That's the part I struggle with. I know how bad it is, but then why aren't there more campaigns and projects to raise money to find a treatment? The stats are shocking and really do suggest that no one cares.

I want us to help ourselves by doing things to forward the cause. The lethargy is staggering though. I don't want this thread to turn sour because I honestly have good intentions.

I never want to see another thread where someone is suffering unbelievable horrors. I never want to see any more tears relating to this condition, and I definitely, never, ever, want to see another suicide. That's where I'm trying to come from.

12,000 views (that's just from here, there are thousands more via Facebook) and around 70 donations. Let that sink in. I wish the tinnitus community would rise up and kick the shit out of this condition once and for all, but it will never happen at this pace. It seems like a lost cause.

These 12,000 views are not all unique views I believe.

 

[Markku]

These 12,000 views are not all unique views I believe.

No they're not unique, every opening of the thread counts as one. However, across this thread, Twitter and several Facebook pages and groups that have shared the fundraiser, well over 20,000 unique tinnitus sufferers (at a minimum) have seen the fundraiser.

I guess it wouldn't be an overstatement to conclude that the number of donations to the fundraiser can appear disappointing, no matter how it is spun.

@Ed209 goes over the situation really quite thoughtfully above.

 

[Paulmanlike]

@Danny Boy I was really sad and I knew I recognised your face when I saw it somewhere else other than here.

I enjoyed reading your contributions on here.

I haven't been on here for a while, but I've logged back on to send my thoughts to your family.

Absolutely heartbreaking to see a member on here pass away and I will never forget the encouragement and support I had when I was battling this condition last year and even to this day they ring, I feel assured there are great people here and one of them was Danny Boy.

RIP mate x x

 

[GregCA]

Last year I was involved with another fund in writing letters to some rich and powerful people to make a contribution to the tinnitus cause. I received four replies and three mentioned that most with tinnitus have it mildly or they can habituate.

Unfortunately (or fortunately), they are not wrong, but lumping all tinnitus in the same bag is not helping our cause. If there was a different name that described its importance, perhaps it would generate more empathy (and more donations).

For example, a donation campaign to research "skin tags" or "moles" isn't going to convert as well as a donation campaign to cure "skin cancer" or "melanoma", even though one can be a dangerous variant of the other.

What we desperately need a cure for is "Mega-Tinnitus". If anything, it'll prompt some questions. "hey but what _is_ Mega-Tinnitus?".

 

[Lex]

Why is tinnitus so hard to fund?

I know it sounds like a rant, but it's more of a big why? I've spent the last few days contacting tinnitus charities, and groups, so they could share our campaign. Most didn't want to.

Because tinnitus is not taken seriously enough by people, including many sufferers themselves. For them, Danny Boy's case is extreme and rare, something that won't happen to most people because many eventually habituate. Tinnitus is something that can be lived with is the common belief. The few sufferers who have it worse are made to feel inadequate, like they didn't think positively enough or tried mindfulness enough that's why they can't get better. I won't be surprised if they feel jaded. You can't have it both ways. Illnesses that have strong medical funding are usually life-threatening and/or debilitating.

Also, I've seen a few comments on this very thread and also in the GoFundMe thread asking how the funds will be used exactly.

 

[Markku]

Also, I've seen a few comments on this very thread and also in the GoFundMe thread asking how the funds will be used exactly.

@David (Chief Executive of the BTA) has already provided commentary on that in this post.

Hopefully that helps shed some light.

 

[glynis]

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

 

[Bill Bauer]

Do we know for a fact that Daniel had committed suicide?