[Danny Boy Memorial Fund] A Discussion in Regards to the Beneficiary

Hi vermillion, putting the money towards awareness isn’t an option.

 

Your plan sounds good to me. Whether you leave the universities in or out is your call. As Kelpie and Greg point out there doesn't seem to be a way of getting the money to the researcher, it will just be co-mingled with other funds. The way the list is right now, I would vote for inviting proposals from international investigators or for supporting a student.

There was just an influx of donations, probably as a result of "talking it up ". Plus in the beginning of the month, people may have more in their budget.

Thanks for all you do-
TC

 

Hi Ivan, to my knowledge Berthold Langguth isn’t involved with neuromod. It is lead by Dr Ross O’Neill.

Edit: I did a little research and have seen he has an advisory role.

 

By giving the funds to an university would be like throwing our previous glass of water into a beautiful green swimming pool that is already filled with water. Harvard University just as one has 34 billion in endowment funds and has an allocated medical research fund of 1.5 billion.

Any university or corporate successful treatment does not have to be accepted by healthcare unless it's an approved FDA or European Union drug. If a successful treatment is government funded then it has to be accepted by Medicare, therefore hospitals and doctors will usually provide it for all.

I have an idea that will possibly not fly with others here. Hire a highly professional fund raiser with our funds and they would be able to 100X more dollars. They would be able to connect with the super powerful rich and corporate that we are unable to do. Then have a non profit health giving agency manage the funds and buy needed mouth guards and such for those with tinnitus who can't afford them.

 

It’s not quite as straight forward as that, Greg. It would be difficult to raise funds even with a professional fundraiser otherwise tinnitus charities would be rolling in money already. However, if someone could show how effective this route can be then we’ll take all options seriously. Thanks Greg.

There are funds we could apply for but the ones I looked into specifically ruled out advocacy work, so I didn’t proceed any further. I still can’t help but think that if everyone who has viewed the campaign so far donated £5 we would have around £250,000 now. If we averaged £10 we would have £500,000, but I suppose that’s wishful thinking. I wonder what stops people? I’m aware that many may see this as a waste of time, but surely that’s self-defeating? Getting everyone to donate is totally unrealistic, but up to half - in an ideal world - should be doable. At the moment there are 160 donations, but around 15 or more of those are repeats from the same people. In reality, 145 people out of around 50,000 have donated.

I don’t like going down this path, but I would just love to know why this is? We could really make a difference if more of us got involved. I don’t want to come across as ungrateful or as badgering people for money because that’s not what this is about. It’s about helping ourselves, the community. Nobody personally benefits; we potentially all do, but it does take commitment as JimH once said. If any of you have ideas about engaging more people I’d welcome them here as well, and I’d love to hear opinions from people who don’t want to donate because that’s also useful information. If we can improve our efforts in some way I’m all for discussing these things.

Anyway I digress, sorry. My current opinion is with the money we have, funding a student maybe the best option. But, we will let the people decide once the poll is created.

Cheers for the input everyone

 

That is true. I once had exposure to this from a previous health employer. Granted the cause was never tinnitus, but we were able to hire a few successful fund raisers that raised a ton of money for families who had a special needs child. I think that you are right as tinnitus for some reason doesn't carry significance.

I think that some of us know a few rich people but feel that it would be awkward to ask them.

I would love to meet you in person as I would others here. Talking about personal thoughts does establish a special bond between us beyond just tinnitus.

 

Quick update: we’ve decided to do the poll on Tuesday, instead, to allow more time for discussion.

 

BTA and Tinnitus Hub are masters at surveying the tinnitus population. Do they have any insights into that question based on previous work?

A professional fundraiser will take a percentage of what is raised. 5 years ago our church did a campaign to raise 5 million dollars to build a school and do some major repairs to the church. Church leadership hired a professional fundraiser from an agency that specialized in non-profits. The agency's fee was 10% of what was raised, plus expenses.

Sorry to get off topic,
TC

PS As far as the effectiveness goes- the professional was only able to raise half of the goal over the course of 1 year. So that meant 10% in fees plus close to $100,000 in expenses. Ouch!

 

I know loads, Greg, but like you say it’s not that easy. It’s not like I can just go and ask ‘any chance you could give me a million quid mate’

I know plenty of great people and they have already done a lot for me. I did get some of the consultants and GPs I know to share the campaign amongst their professional network and peers. I figured it was relevant and you never know who might read it from their network. Some of them donated as well. There’s a few more influential people I haven’t asked yet which I need to get round to doing.

 

@valeri thank you for donating toward's Danny's fund. So sorry that you lost your job.

 

Greg this is a brilliant idea!

I fully support this!

It would be much better use of a small amount we have!

 

It would be awesome if $2.5 mil was raised for tinnitus community in a year!

 

Hire a new team: one young gun, one chemical/bio person, a math person, hearing person and engineering person and let them work together on collective research ideas.

Also, look no further than Tinnitus Talk members to gather the research team.

Otherwise, it's hard to figure out who to support for our tinnitus cause.

 

My personal opinion is that we are not in a strong enough position to hire a professional. They usually like to work over an extended period of time, like a year for example, and most require high fees. You can pay up to a £1000 per day for their work if you don’t go via the commission route, and I doubt a professional agency would take us on for commission work? Maybe I’m wrong, but I know through experience with another organisation that fundraising is not a straight forward process. It’s not as simple as handing over £4K to receive multiples of this figure. If this were the case pretty much everyone would be doing it. I’m not an expert in this field by any measure, but I would assume that most trust funds find their way to Universities and big Charities.

I agree it’s an interesting concept, but I’m not convinced it is possible.

Maybe the BTA could give further insight being a registered charity.

 

It would be truly awesome!

Couple of things to keep in mind- In the instance of the church, the money didn't come in all at once, rather the amount someone pledged could be paid over a 5 year period. For example, if I pledged to pay $5,000, I could pay $1,000 a year for the next 5 years. Well, circumstances change and people are not always able to meet their obligation 5 years out so you can really only count on receiving about 80% of the amount pledged. This in a church where membership is pretty stable and community spirit is strong. I imagine the percentage might be lower in other populations. So, if you do the math, $2.5Million yielded about $1.6Million too be paid to the church over a 5 year period. One other thing you should know, one person pledged $1Million- guess whose name is on the new school building!

TC

 

I know a similar story of a man who donated a substantial sum of money to restore the main hall in our local Grammar School where my wife works. He tragically died before it was finished, so he never got to see it.

The school was founded in 1512 during the reign of Henry the VIII, and he was part of the alumni.

 

I agree on both accounts but we have to be realistic.

 

I can relate to what your saying @Ed209. It would be difficult since we are not a hospital. For us it wasn't difficult to get a corporate sponsor (a large bank) to pay for the fundraising fees. We were able to raise 10 million dollars on three different occasions. The bank received a lot of publicity in return and a tax write-off.

 

Right. I think we need to look at the big picture. BTA and ATA are the registered charities/nonprofits. That will get them resources and into fundraising programs that individuals can't access.

Actually Ed, I know you are frustrated with the amount that's been raised for Danny's fund, but I don't think its that bad at all. Are you familiar with Michael Haar? He was a musician, took his life a couple of years ago and his family and friends in the NY area did a walk to raise money for the ATA. They raised $6,000 US. They are making it an annual thing, the next one is coming up soon https://www.eventbrite.com/e/second-annual-silence-was-stol… . It will be interesting to see if there will be an increase in the amount they raise.

Danny's fund is at 4,000 GBP , that's about $5,100 US- not that far from what the Haar's raised. Keep in mind, they probably have expenses to cover while you have little to none I assume. And yes, you worked hard, it was like banging your head on the wall BUT you won't do that again, so call it the price of an education!

Question- will you be able to access the people who visited the GoFundMe page and left a message or donated or both? Maybe we could do a little email survey to find out where they learned about the page, why they did or did not donate, why they did or did not leave a message, was GoFundMe easy to use, etc. Maybe we can learn from and cultivate what you started and keep brainstorming other ideas.

TC

 

You are better off donating to hearing loss research as a treatment for tinnitus than the ATA and BTA.

Maybe make it go exclusively towards hyperacusis research.

 

I’m not aware of Michael Haars case, but there’s a similar one over here with a famous musician called Craig Gill (drummer of the Inspiral Carpets). He hanged himself because he couldn’t cope with his tinnitus and his family raised £1030 in his memory.

James Ivor Jones’s family raised £5621.94 and they had national press exposure. In fact, so did Craig Gill. There is another ‘in memory’ fund for Riaz Ahmad Sajid that has raised £0. I totally agree that we need to better understand why people don’t want to donate and maybe a survey could help answer this very intriguing question.

I see what you’re saying, but I’ve done other fundraisers where I haven’t had anywhere near as much exposure as this but have still managed to raise a similar amount. I’ve also been involved with loads of charity balls/auctions where the organisers raise money on another level, but also have overheads on another level. In fact, my band at the time headlined one of them, but I do/did help out in other ways.

For Danny’s fund, one of the major Tinnitus Charities didn’t want to lift a finger to help, and yet, those are the routes we should be taking first. That kind of shocked me really, but maybe it shouldn’t have. I tried to cover all the logical ideas but it really has been significantly harder than any other charity related work I’ve ever done in my life. I did a lot of research to see what people can pull in based on the number of shares and views, and we aren’t doing very good if I’m being honest. At one point we had so many views and shares that we were trending on the front page of GoFundMe, but all of these views haven’t converted very well. Again, I don’t want to come across negatively here (that’s not my intention); it’s just educational to know this I suppose. It helps us to see the bigger picture and what we’re up against and what other Tinnitus Charities are up against. However, I would like to thank all donors from the bottom of my heart. You people are the real deal.

Like you said, I think we need to better understand why tinnitus related work underperforms so drastically. I’m not sure emailing current donors - at the moment - is a good idea as it will display the message as an update on the main campaign page. But, it’s possibly a survey worth doing to find out what will make people take action.

Anyway, thanks for all the input so far and keep shooting out ideas here before we create the poll for donors to vote.

Cheers everyone.

 

William Shatner was on CNBC earlier this week. He said that he had adjusted to tinnitus, but needed to add that tinnitus was ringing in the ears. So much for him being a spokesperson. Last year when receiving an X-Ray the tech said that she never heard of tinnitus.

In my experience many think that tinnitus gets better.

 

There can be a lot of conversion problems, and I don't know what data points you have for each stage of the funnel, but my gut feeling is that tinnitus simply isn't perceived as a big deal. It's sad but I think it's fundamental. If the conversion rate is poor but you have lots of entities at the beginning of the funnel, it means you did a great job to bring them there, but nothing is tickling the empathy cord enough to have them pull the trigger.

Unsurprisingly, it mimics what we hear from doctors ("you'll get used to it", "you won't notice it soon", "it gets better", etc), and what we hear from friends/family who just see us live our lives as if nothing happened. Lots of talks about "management techniques" make it sound like you have a way to manage your condition, like a diabetic manages his/her condition with insulin shots and goes on with his/her life.

I don't want to rehash what has been expressed thousands of times on this very forum, but the mere fact that tinnitus is only severe in a small fraction of the cases makes it hard to gather empathy around the global "tinnitus cause". A different word that dissociates the severe sufferers from the "run of the mill tinnitus" (no offense intended - I'm happy for those who fall in that category, and quite jealous too) is needed in my opinion. I wouldn't expect a campaign to find a "cure for moles and skin tags" to pull in as much as a campaign to "cure skin cancer".

To be honest, what we need is a cure for "MegaTinnitus". If we started calling it that way we'd - at the very least - trigger some curiosity, the stepping stone to awareness.

We are cursed by the fact that most tinnitus cases are mild and thankfully don't impact the quality of life of the patient too much. Being associated with such a mild condition (that often resolves itself naturally) is hampering the efforts done over many directions, including fundraising.

 

Exactly Greg, it’s a complex web that we need to untangle. Something that would help immeasurably is if we had an objective way to measure tinnitus; that would be a game changer both diagnostically and for proving ones disability.

I could understand better if our audience was mainly the general public, but it isn’t. It’s predominantly people with tinnitus who have been exposed to the campaign and this includes some of the worst affected. It’s a shame that people dying isn’t enough to tickle their empathy cord. I’ve looked at many different tinnitus related fundraisers and in my opinion they all unanimously underperform, so something is stopping people from donating when they see the word ‘tinnitus’ and this includes tinnitus sufferers. I noticed @Samantha R kindly reached out in the comments section to many sufferers on Facebook (via both the BTA and Tinnitus Hub) but it didn’t change anybody’s minds. I checked their names against the latest donors and none of them showed up. The general theme is that they are demanding a cure, but they won’t step across the line to objectively help by donating towards research. Most explicitly say how bad it is and how it’s ruined their life etc and still don’t donate. Something is stopping them and I’m not sure what. I can only assume that it’s because they think it’s a waste of time and/or they don’t trust the charity, which is unfortunate. I sound like a broken record, but if everybody thinks that way then not much will happen, but if the belief can be instilled then there’s the possibility of creating a domino effect.

 

@Ed209,
I would give my right arm for a cure for everyone even if it was not a cure for myself.

I always think - do what you can for others as one day you could be the one needing help... It's something I truly believe in.

love glynis

 

Same, Glynis. Whenever I’ve personally witnessed the suffering of others, or when something has touched my life, I have always tried to help no matter what the cause or reason.

I don’t believe in god but I’ll tell you a story that’s quite spiritual and is something I’ll never forget. When I had my original chest operation, I felt the bar inside me move (and it wasn’t supposed to). So, I went to A and E to get an x-ray to see what was going on as I had a lump developing under one of my ribs. Anyway long story, but the dr who saw me refused to do one (work that one out) no matter how much I pleaded with him and told him of the seriousness of it.

The very next morning I woke up in the most excruciating pain I’ve ever felt and I knew something was seriously wrong. My mom didn’t have a car so she was absolutely frantic running around trying to get a taxi to take me 17 miles to the hospital where I had the surgery. Not long after (I mean this taxi was basically instant) this guy pulled up and we got in. Along the way my mom was talking to this guy and it was the usual small talk, until that is, we passed this church. Now for some reason, my mom felt compelled to mention to the driver that she once knew a lady who visited this church (a story she’s told us all many times). When she was pregnant, with me, they became friends on the ward and my mom always said she was a very special person that she never forgot. They got on so well that she wanted to go see her after she got out. Unfortunately, she died not long after and my mom always said she never forgot her, such the impact she had on her life. Anyway, she tells this to the driver and he goes her name wasn’t Frieda Thomas was it, and my mom said, yea! How did you know. At this point the driver couldn’t contain himself and told us that this lady was his aunty and goes on to tell us a story of his own. The small talk ended and he went on to tell us about his past; he says he was a very bad man who was into gangs, drugs and guns and did bad things. One day he became seriously ill with pneumonia and he said the drs told him he likely wouldn’t make it, and that he remembers vividly that day. He sat and he just couldn’t stop crying, he said the dam basically burst. He then said that he prayed to god to save his soul and in return he would do his work and reform his ways. As you can guess, he survived against the odds and this guy whose name was Noel, said he did change completely. He said he was unrecognisable as being the same person and he started going to the church where he used to go with Frieda, which was the church my mom pointed out to him.

Now, Noel was basically in tears as he was convinced that Frieda had sent him to save my life. The hairs were standing up on my neck and arms because I felt a kind of aura. When we got to the hospital he asked if he could say a prayer in the car, to which he did. When my surgeon finally got to me, he told me I was lucky to be alive as I had a steel rod resting on top of my heart and if it had slipped either side of it, it could have sliced it open.

When I thought back to the events of the day after being operated on, it did make me ponder because it was almost Hollywood-like in terms of the story. Everything that happened was quite literally unbelievable including how quickly he turned up. You honestly couldn’t have written those events any better.

 

I would have donated at my first view of Danny's fund. But, because of the set up through PayPal I did not do so even though they had the "donate as a guest of PayPal". Too much personal information made me hesitate. When I raised the issue my concerns were not really taken seriously.

In short, you are losing the quicker first view donations because of that issue. It would be easier if all one had to do was supply the credit card number as many other donation sites do.

That needs to be changed to get the first emotional donation before people decide not to because of the complex issue by PayPal and GoFundMe. They and this cause are both missing out on the initial emotional donations.

Don't want to hear about this or that or why. It was already unsatisfactorily addressed.

But, we donated a few days later after talking about the importance of this. Most people will not do that.

@Ed209 wrote:

"It helps us to see the bigger picture and what we’re up against and what other Tinnitus Charities are up against. "

Donors are simply forgotten over time by Tinnitus Charities like the ATA. Organizations need a person to keep in contact with these people. A simple monthly hello and thank you for the past donation and not asking for more but sharing how the fund helped the organization.

I speak from personal experience. I have had it with the ATA's organizational process. I have had it with being tossed aside and forgotten and made to feel invisible. It is not the reason we donated all we could - my assets from the sale of our company. Every single dime. I didn't get a car or a vacation home. We simply gave to help others.

After one meeting back about 2005 or so we were taken aback when the board member and ED of the ATA bragged about having dinner at one of the most expensive dining places in Los Angeles.

What would you say to a person who donated over a quarter of a million dollars when that person contacted the ATA and received no reply?

People are simply not "views". You cannot make us simply views to a donation charity or site.

Furthermore @Ed209 I have been where you are regarding fundraising efforts. Someone should be in charge of thanking the donors monthly and giving up dates as to what is happening without asking for more money. That will happen naturally. Nothing worse then getting that request in the sound of....more more more.

I have generously donated to both your fundraising causes now.

But I feel this lack of synergy. The lack of cohesiveness. Even that one "major Tinnitus Charities didn’t want to lift a finger to help" there is no connection as a whole when it comes to our tinnitus community.

Sadly there are members here on Tinnitus Talk who can well afford to gift to Danny's cause. But they do not. Instead the wonderful members who have lost a job or do not have money give what they can give while those who are in a good financial position... go into hiding saying they give enough by donating time answering posts.

And I do not need any reply or explanations Ed.

 

Just wanted to mention that when the GoFundMe started, someone posted about Danny on the Facebook group I belong to. So this morning I found the post, left a comment and it moved back to the top of the postings. Checked later in the morning, it was still there but now its gone. Admins took it down. Apparently reports of deaths and suicides are extremely upsetting to members and they prefer not to see them.
TC

 

This is very true. It's true at the church where I am treasurer. We had a someone to do just what you describe, he knew everyone personally. It was very effective.

Again, very true. Hear this over and over again. When there is a community, people need to feel connected and appreciated.


Getting people involved in choosing how the money will be used was a great idea and an opportunity to thank them for giving. You want to create as many of those opportunities as possible

 

What personal information made you hesitate? I went though that process myself a couple of times and found out that there's 2 kinds of "personal info" requested:

First - used by GoFundMe - is the First/Last names to show an entry in the "donation log" of the GoFundMe site. You can put whatever you want there - it is just used for display on that website (I put "Greg" as first name and "CA" as last name to try and trigger emulation from other forum members who recognize a familiar name there). You can also decline the publication of this information (however fake it may be) by the site.

Second is the Name, Credit Card Number (along with expiration date & security code if I recall correctly), and address. This goes to the Credit Card processor to make sure the charge is not bogus, and can obviously not be fake info. Anytime anyone wants to charge a credit card online, these pieces of info need to be provided. There is often additional fields (such as phone numbers) to protect against fraud (they correlate numbers on their servers as an extra security measure). In many cases (although I do not know for a fact that PayPal Guest Checkout uses this process), the personal info doesn't even go to the "merchant": only a token so the merchants are not exposed to your personally identifiable information.

Was there any other piece of info that you were asked for? I don't recall anything else.

What donation process would you be comfortable with instead?