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

[sunnyd]

Hey @Jazzer

Thanks for your message. Yes I've watched similar video clips on YouTube etc.

Personally I'm a great believer in shock tactics to get people thinking, it works for me. I go back to my original message when I mentioned a film called 'It's All Gone Pete Tong' that film scared me silly and i was adamant that i was gonna stop clubbing which I did for a very long time until complacency set in. In hindsight I wish I'd watched that film every month to cement the scary possibility of tinnitus and losing my hearing.

I just want the public to know that there is a different side to tinnitus. It's not all barely there, only audible in a quiet room. We've all met those friends or family who get tinnitus sometimes and they don't understand why it's such a big deal, just ignore it and don't obsess about it etc etc. One of the most cutting comments was from my own mother at the beginning of my tinnitus journey when I was trying to explain to her I was struggling. I was trying to get her to read a book on tinnitus to better explain what I was going through. Her response was I know what tinnitus is, lots of people have tinnitus, I don't need to read about it, stop obsessing about it.

I agree on what @Starthrower mentioned above in that the Tinnitus Organisations probably wouldn't be happy for morbid stories out there. But I really believe if the public knew the truth that they would be asking questions and demanding funding and more research be done. Every single one of them or their family is just one too loud noise exposure - one too stressful event - one too many ototoxic medications etc etc away from possibly joining this tinnitus club.

My goal is for the public to start asking questions. for eg: Why do we not know that taking my kid to an IMAX cinema is damaging my child's hearing. Why do we not know there are over 200 medications that could give me or my family tinnitus etc etc.

You mention "Actual distress is perhaps too nasty to sell to a largely disinterested audience" but that is covered daily in soap operas all over our TV screens with stories of drinking and drugs etc etc, so I don't see the public not wanting to watch.

As everyone says it's just so hard to convey the constant torture to friends and family. But I really think following a character's journey on a soap opera etc over many weeks / months dealing with tinnitus would get the public thinking and asking questions. We can then let the properly informed public do our work for us in raising funds for research.

I'm serious about sending a basic script out to producers, script writers, TV studio heads etc etc even if I have to do it myself. It's not as if I'm writing lies or fiction, it's the truth and it could just be my own story.

It might not be scripted well, but at least I know I gave it a shot.

You miss 100% of the shots you don't take.

Thanks again Dave!!!!

Man Hugs

Stuart x

 

[Samantha R]

@Ed209,

I just couldn't agree more with you and I wanted to let you know I share your frustration.

I posted about the campaign in an online tinnitus Facebook group, and while it's against the rules of the group to fundraise, I mentioned it and referred people on to GoFundMe.

News had just broke on there (somewhat late) that Danny had passed.

All I got was 5 "likes" and a comment from somebody asking what happened to Danny, and someone telling people to watch out as it could be an "elaborate scam" (lol).

There are over 20,000 members on that Facebook group as well.

I feel like banging my head against a brick wall to be honest. If we can't get any traction with sufferers, then what hope is there for us?

We need to be part of the solution. Sitting back and waiting for a treatment or cure is most likely going to get us nowhere.

 

[Rina]

I loved you so much @Danny Boy... miss you every day...

 

[jimH]

I'm so appreciative towards everyone who has donated or shared this campaign. However, I still can't help but shake the feeling that not enough of us are getting involved.

I feel the same way, Ed.

I'll just add the word "committed." I once read something that stuck with me over the years that compared being committed to that of being involved:

"If you consider a plate of ham and eggs, a chicken was involved but the pig was committed."

It makes the point that being really committed to something requires some sacrifice. That it's going to cost you something.

We need more people to become passionately committed to this campaign. After all, if we won't help ourselves and our cause, who will?

 

[Starthrower]

I still can't help but shake the feeling that not enough of us are getting involved, and I'm not just talking about this campaign either. I'm not entirely sure what it would take to motivate people, en mass, to really get behind something.

Usually, a personal experience of some sort. The fundraiser having contacts that donate because they know your mission and want to give donations. The donors being recognized sincerely for their contribution(s) over time and not forgotten.

A lot of wealthy people cannot take the tax break from donations in the USA. So they take the position that they won't donate. Totally pisses me off.

Many people from the board/internet may want to remain invisible. An easier way for them to send in a cashier's check made out to Danny's fund with the BTA? I think a lot of people go out of their way to not be traced for various reasons on the internet.

Mostly be patient with this. You never know when preparation will meet opportunity.

 

[TuxedoCat]

All I got was 5 "likes" and a comment from somebody asking what happened to Danny, and someone telling people to watch out as it could be an "elaborate scam" (lol).

Grim reminder of how often the tinnitus population has been exposed to snake oil and scams with the effect of eroding overall trust and increasing suspicion.

If BTA or ATA get high ratings for trust among the tinnitus population, perhaps asking them to post it on other forums, or somehow give some indication about the authenticity of the request, or an endorsement, would have a better outcome. I've seen Torryn Brazell post on a Facebook group, most recently suggesting someone ask for double blind, placebo controlled trials that show efficacy of a product before purchasing it.

Might be especially fitting since the money is designated to go to BTA. Then again ATA may see it as BTA diverting donations away from ATA if the Facebook group is US based.

PS-Sorry for the thought stream.

 

[Ed209]

All I got was 5 "likes" and a comment from somebody asking what happened to Danny, and someone telling people to watch out as it could be an "elaborate scam" (lol).

I had a very similar experience. I wrote to every charity and Facebook support group going. Some with large followings did get back to me and shared the campaign which was awesome and I was really grateful. However, most did not share it which is very fitting with the overall theme of 'banging my head against a brick wall'. A major charity (which I won't name) got back to me saying they 'support' our cause but wouldn't share our campaign on their Facebook page. Work that one out. This is part of the reason why tinnitus is so hidden away: when tinnitus charities aren't interested in sharing a common cause that benefits us all then you know it's bad.

If you ever try to raise money for tinnitus you will soon realise how up against it we are. From my experience, it's difficult to get other tinnitus charities involved, and other tinnitus groups, etc. It's extremely difficult to get sufferers to commit to anything; this includes donations, actively getting involved with spreading the word and sharing the campaign, etc. I tried to offer a solution to allow people to donate £1 each and nobody came forward. I'm literally trying everything I can to make it as easy as possible for people to join in and help, but so few are interested that I find it quite unbelievable.

I'm trying to be as open and honest as I can so everyone can see what we're up against. I've spent countless hours contacting all kinds of people to raise the profile, and this even includes the gofundme team who wanted to take this to the press. But with respect, that decision has to be with the family and we will completely honour and understand whatever decision they feel is right. I see countless threads talking about the need for 'cures' and 'treatments', but no actions, at all, to help this become a reality. All I see are empty words and no backbone to commit to anything.

What annoyed me even more, is after spending so much time trying to help the tinnitus community, I start getting people questioning my intentions and telling me what I should be doing! It's quite simple, if you don't agree with what's being done as a group effort, then do something of your own doing all the things you think should be done and I'll donate to that as well. It's not difficult to get off your arses and do something proactive for a change instead of constantly moaning on here and then not helping yourselves when you have a chance to. Please remember that we are doing this for ourselves, the tinnitus community. Nobody else benefits from any of this.

I know this sounds like a rant, and it kind of is, but it's more of an eye opening educational one. I'm not angry at all, why would I be? I'm just hugely disappointed because it's an opportunity for us all to unite and do something special.

I'll finish by saying if any of this resonates with you, and you want to help change the reality of what we are facing, then please get involved! You could do your own individual sponsored charity run; have a garage sale; host a charity event; do a raffle or a lottery, etc. There's loads of things we can do. Now imagine if we all did something. Add all that collective fundraising together and we've got a huge amount of money on our hands.

To everyone who has helped, either by donating or just by sharing and/or writing to other groups, etc, THANK YOU. If everyone was more like you then we would have probably found a treatment years ago. Every penny of the current total is all because of you and we will make sure it's well spent.

 

[Ed209]

"If you consider a plate of ham and eggs, a chicken was involved but the pig was committed."

That hits the nail on the head, Jim. Brilliant quote.

 

[Samantha R]

@TuxedoCat,

I suspect that all sufferers of "incurable" diseases and conditions have been subject to scammers, but I found it quite offensive that the person would just write that without even having taken a look at the campaign.

To be fair to the BTA and ATA, they don't have a large budget to work with. That could be because of the perceived "lack of trust" from the public, making them more unwilling to donate or the apathy of tinnitus sufferers in contributing to their cause.
I've seen a few things I don't like in regards to these organisations - eg. money being spent on CBT for sleep and that kind of thing, but we also need coping techniques while we wait for something to actually turn the volume down or off.

However, in regards to "Danny's Fund", the BTA has committed to allocating these funds towards research into a real treatment or cure (not a coping mechanism), and that we here at Tinnitus Talk will have a say as to what project that goes towards. I think this is excellent, and why I was happy to donate myself.

I do have to wonder, as you did, why there is the lack of willingness for these external tinnitus charities to support the campaign. At the end of the day, we all want the same thing, why can't we work together?

 

[Samantha R]

@Ed209,

Yes, yes, yes, your post was awesome. You have done an amazing job, and I hope you know you've got others trying as well.

Curious as to the reasons these groups didn't want to share the campaign? Why don't these groups galvanise their large number of members and fundraise? I'm somewhat social media illiterate, but as long as a fundraising campaign is checked and verified as legit, what would their reasons be for not allowing it on their page?

Raising money is one of the only ways we are ever going to see a cure.

We own and manage a caravan park in a little town in Australia. We get a lot of what we in Australia call "grey nomads", retirees travelling around our glorious country in their caravans. I imagine a significant proportion of these people have some degree of hearing issues.

I have put a poster up in our office today about Danny's fund, and one gentleman who checked in this morning took particular interest in it.

He had hearing aids, and tells me how he still struggles to sleep due to the ringing in his ears.

He recalled the early days of his hearing loss and tinnitus, and he became quite emotional, he mentioned how close he came to taking his own life and was devastated that a young man of 27 had in fact suffered so greatly.
He said he would leave a donation, I hope he does.

We are trying Ed, I'm not giving up.

 

[Ed209]

Curious as to the reasons these groups didn't want to share the campaign?

A lot of the people I wrote to didn't reply at all, so we'll never know. The large charity responded with this:

Firstly, I highly doubt they get a large number of tinnitus fundraisers to share, and if they did, why not share them?

And secondly, I find that final sentence: 'we really support your cause', a bit condescending. I thought it really seems like you support the cause!!

Anyway, I went the forum route and they deleted my post after waiting over 12 hours in a moderation queue. This is what you all don't see. It's HARD work. I replied with:

In the end they allowed it on their forum and now I can see why!! It's like a ghost town on there. Their Facebook page has a large number of followers which would have helped significantly, but they couldn't be bothered to click a couple of buttons.

The two groups that did share the campaign (Other than the BTA and Tinnitus Hub) have a following of 16,504 which was really good exposure, but those two combined still don't have as many followers as this charity does.

Anyway, all of that is really old news now but I hope it answers your question.

 

[Lex]

The majority of posters complain about the lack of research, but when they are offered a chance to change this, what do most of them do? Absolutely nothing! But they still continue to complain. It's a real head scratcher for me.

I donate every month to Hyperacusis Research, but I'm not expecting to see anything come to fruition within my lifetime. Even if someone donated a billion dollars to the cause, I still don't think I'll live to see the day a safe and effective treatment happens. I donate because I believe future generations deserve better than I do now, not because I'm hopeful it can help me.

I donated to this fundraiser for Danny Boy because I liked Danny Boy, but I really don't see anything significant happening from it, sorry. But other sufferers don't know Danny Boy, and they also don't see this fundraiser will make much of a difference. That's probably one of the reasons why they don't donate.

There's something about tinnitus (and also hyperacusis) that makes sufferers cynical. I started out idealistic too, but being told over and over again that I should just think more positively and that it's all just in my head -- by medical professionals, no less -- gradually left me with a sense of resignation which I really don't know how to shake.

Many people who have tinnitus have a mild version of it, enough to make them sweep it aside as a minor inconvenience they have habituated to. Severe tinnitus (not to mention hyperacusis) is much rarer, and we all know that rare diseases don't get the attention and money they need. There's simply not enough of us to make the world care.

A little flicker of warmth lit up in my heart because of the optimism from people in this thread, but at the end of the day, I can't bring myself to hope because experience taught me that I would just end up disappointed. I know I'm not the only one here.

So there it is. I wish I shared your enthusiasm @Ed209. I really do. Maybe it's hope that we need to stir in sufferers' hearts, and the rest will follow.

 

[Ed209]

So there it is. I wish I shared your enthusiasm @Ed209. I really do. Maybe it's hope that we need to stir in sufferers' hearts, and the rest will follow.

I've always been brought up to believe we have to affect the changes we wish to see. If future generations benefit from money that's raised today then we have succeeded in our goal.

I have a severe case that could have easily kept me in a deep state of depression, permanently. I had no choice but to adapt everything that my life was built around in order to move forward. I'm now in a much better place and want to give back, but it's proving to be beyond difficult. I now realise that I can't help those who don't want to help themselves.

My hope is that more will join us, but if not, then at least I know I tried my best.

 

[DebInAustralia]

I've always been brought up to believe we have to affect the changes we wish to see. If future generations benefit from money that's raised today then we have succeeded in our goal.

I have a severe case that could have easily kept me in a deep state of depression, permanently. I had no choice but to adapt everything that my life was built around in order to move forward. I'm now in a much better place and want to give back, but it's proving to be beyond difficult. I now realise that I can't help those who don't want to help themselves.

My hope is that more will join us, but if not, then at least I know I tried my best.

Don't be disillusioned Ed.

You are right. We can't help those who do not want to help themselves.

But, that's no reason to give up.

Contrary to some comments here, I really do believe every little 'bit' helps. I don't think this campaign is in vain.

And, you have definitely achieved your original goal; to honour Danny.

 

[glynis]

I push it twice a day on Twitter so hope it helps as most of my followers are all about ears and tinnitus.

love glynis x

 

[TuxedoCat]

I suspect that all sufferers of "incurable" diseases and conditions have been subject to scammers, but I found it quite offensive that the person would just write that without even having taken a look at the campaign.

Hi Samantha, please don't be too offended by that person's reaction. I don't know the person, their age or where they are located, however I can share that here in US people are constantly being targeted by scammers. And the scammers seem to have become more sophisticated. I'm the treasurer of our church. Earlier this week I received an email, supposedly from the Rector (priest in charge) asking me to email him back. Long story short, it is a scam. Had I replied to the email, I would have then been instructed to transfer some of the church's money into a bank account, supposedly to pay a bill. But, it would have been the scammer posing as the Rector, the head of the congregation, a man who has devoted his life to his faith, instructing me to do this and the scammer would hope that I wouldn't question a directive from the Rector. How sick is that, stealing church money? Plus, it gives me the creeps that someone has hacked into and is reading emails - either mine or the Rectors.

People give or don't give for all kinds of reasons. I am not a professional fundraiser, but have had conversations with one who used to be a member of our church. I learned it's not as easy as I thought it might be.

I didn't know Danny, but I donated because I appreciated Ed's passion for the cause that he communicated on this site and because the money was going to BTA earmarked for research. I agree with others who have said Ed has done an amazing job. Last night I checked the Facebook group I subscribe to and found someone had kindly posted the notice about Danny and the fund in his honor. Thank you to that person. Have to say tho, the effect wasn't quite the same as from reading it on Tinnitus Talk.

Samantha, I hope that gentleman comes back and makes a small donation and that you both experience a real sense of joy in that moment. Let us know. -TC

 

[Michael2013]

Wow. I occasionally come back to the forums to read the latest success stories and see what's new. I was not expecting this thread and am really sad to see it. I didn't really know him, but I do remember him always wanting to help and struggling so much to get better.

The GoFundMe is a great idea, and I've added my donation. Thanks @Ed09 for setting it up.

Rest in peace, Danny Boy.

-Mike

 

[another sean]

With low funds I think the most impactful thing we could do is focus on awareness.

And since none of us are celebrities with millions of followers, I think the most impactful way we could get the message out there is by producing our own video content.

Quality content. Well scripted and edited so that it's concise and holds people's attention and draws them in.

We need people to care before we can get them to donate.

 

[IreneO]

We' are over the 3 grand mark and donations are coming in every day. Fantastic!

 

[Ed209]

Let's not let this fade away now, folks. The last few days are showing signs that the train is coming to a complete stop. Keep liking and sharing it on your social media especially if you haven't already. We need to make more people aware of our cause and this requires a lot more activism.

I've set up an advert on Facebook to try and spread this to a new audience. I have no idea how effective this will be but it's better than nothing I suppose. Your help is seriously appreciated.

If we don't reignite the fire, somehow, then the amount we have now is unlikely to go much higher. Let's keep the fight going!

 

[dpdx]

Tinnitus can't be solved by drugs, even though Trobalt did lower his tinnitus from 8/10 to 3 permanently.

Tinnitus was not the reason why he killed himself. It was people around him who destroyed his hope for life so that he finally collapsed under the pressure of tinnitus.

So sharing his personal life is not a good idea, and the real reason is the family that did its all to kill his life or what remained of it.

Why does it say on your profile:

"Cause of Tinnitus:
progressive tinnitus, time of expiring in next 3-6 months"

Does this mean your tinnitus is fading away??

 

[Starthrower]

Might be especially fitting since the money is designated to go to BTA. Then again ATA may see it as BTA diverting donations away from ATA if the Facebook group is US based.

I am in the US. I have such admiration for the BTA and how they are helping this cause to raise funds for research in Danny's memory. They did not turn the idea away. They did not make the request seem unimportant. Instead, @David came here to assure everyone donating that these funds will indeed be used for research in Danny's name.

We need to make more people aware of our cause and this requires a lot more activism.

Yes!

 

[TheDanishGirl]

Why does it say on your profile:

"Cause of Tinnitus:
progressive tinnitus, time of expiring in next 3-6 months"

Does this mean your tinnitus is fading away??

I remember him saying his tinnitus has increased something like 20 times, so 3-6 months probably means until it increases again

He has progressive tinnitus, which means it just gets worse and worse and worse for him.

 

[dpdx]

I remember him saying his tinnitus has increased something like 20 times, so 3-6 months probably means until it increases again

He has progressive tinnitus, which means it just gets worse and worse and worse for him.

Jesus Christ!!!

 

[Samantha R]

@dpdx @TheDanishGirl
It does appear Christian struggles immensely, as you would with ever increasing noise.

I wonder if time of expiring actually means a time limit he's put on himself until he considers taking his own life. In this context, I take expiring to mean "death".

I hope this isn't the case and he is able to get some kind of help. I'm always relieved when I see him post as I know he's still fighting on.

 

[TheDanishGirl]

@dpdx @TheDanishGirl
It does appear Christian struggles immensely, as you would with ever increasing noise.

I wonder if time of expiring actually means a time limit he's put on himself until he considers taking his own life. In this context, I take expiring to mean "death".

I hope this isn't the case and he is able to get some kind of help. I'm always relieved when I see him post as I know he's still fighting on.

I also thought of that, but didn't wanna say it. But I do know he is suicidal.

 

[grate_biff]

So, finally chipped in, after I got past that PayPal stuff. Shared on Facebook with a long post about the hardship of our condition and what a nice lad Danny was!

Just remembered something about him.

Often he would be questioned or provoked by other posters of this forum and I thought, now he is gonna come back with an angry or sarcastic reply. But he never did. He was always calm and unbothered by it!

 

[WaqasVic]

I remember him saying his tinnitus has increased something like 20 times, so 3-6 months probably means until it increases again

He has progressive tinnitus, which means it just gets worse and worse and worse for him.

His tinnitus got manageable but the thing that he talked about was eye floaters and visual snow.

 

[TheDanishGirl]

His tinnitus got manageable but the thing that he talked about was eye floaters and visual snow.

I was not talking about Danny Boy.

 

[WaqasVic]

I was not talking about Danny Boy.

Oh my bad. Sorry about that.