Poll: Why Aren't You Donating to Tinnitus-Related Fundraisers?

This is a question for those of us who have been exposed to a Tinnitus related fundraiser (like Danny's recent one), and ended up not donating.

@Ed209 mentioned that, in relation to Danny's fundraiser, there was a fairly good amount of people who were exposed to the fundraiser, but that the conversion rate was very poor, especially when compared to fundraisers related to other health conditions.

Since we cannot fix what we don't understand, we'd like to learn why the conversion rate is so low, so we need to candidly ask, because we have failed to find a logical explanation.

The poll is set up to not display votes publicly. Keep in mind that this is not a name-and-shame exercise! The only wrong answer is the one that isn't truthful. Everything else is on the table, no judging.

If an answer you need is not available for you to pick, and you feel comfortable expressing it publicly, feel free to specify it in a post to this thread.

Please help us understand so we can learn and get better at fundraising for Tinnitus-related causes.

Thank you for your participation.

 

Hearing loss research is already closer to helping the majority of tinnitus patients and most tinnitus "research" in quotations is about CBT/TRT and cognitive approaches, not curative ones.

 

I'm just a poor boy from a poor family

 

I think the most obvious answer is self-evident - most people who cannot donate to any funds for tinnitus research do not have any money.

Because tinnitus, in fact, is a serious health condition, which can knock out your social life, deprive of work and prosperity. This is a disability. Therefore even small amounts like 5 - 10 dollars for many are very significant in this situation.

Moreover, none of the researchers say definitely - "Yes, give us some money and in the near future we will offer you treatment."

In addition to the placebo TRT or "listen to the birds in the headphones" - which is from the stone age, not therapy.

It is realistic to create a drug that will inhibit precisely those areas in the brain that are hyperactive and cause tinnitus. To do this, you just need to clearly understand the neuromuscular chemistry of tinnitus. With modern means of neuroimaging it is quite possible.

I think Tzounopoulos is on the right track. It should be financed by the US Department of Defense, but there is no money. It's a shame. The ministry with trillions of capital cannot donate several millions to the treatment of its soldiers and veterans.

I live in Russia, a very rich de facto country with oil and gas. But in reality the population is very poor, because of the insane corruption in the government and the presidential administration. Therefore, the average salary is about 350 dollars a month. In comparison with Europe or the US, where it is 3000-4000 dollars.

For Russians, 10 -20 dollars is a large sum.

 

@GregCA
Thanks for setting this up.
The responses will be very interesting.

 

@David,
You mentioned in the other thread that you could give us some insight into your fundraising struggles and reasons for the lack of donations by the tinnitus community.

I’m really interested in your feedback as I am finding the lack of support really frustrating!

Thanks!

 

Thanks for setting this up @GregCA, will be interesting to see what emerges.

I'm pretty strung out for the next few weeks and don't really want to skew the results by getting involved until people have had a chance to vote.

@Samantha R I'll get involved in the debate after that.

 

I voted "I don't trust that the money will go where it's supposed to go"

But it's a bit different than that, actually I am waiting to see who exactly will be chosen as the beneficiary of the funds before making a donation.

 

Out of interest, Julien, who/what is your preferred beneficiary?

Thanks for the honest feedback.

 

Hi @Ed209
It's not really a matter of preference, it's just that I never donate when I do not know what it will be used for. I am happy to see several promising research teams in the list though.

 

I don't understand the 5 people who voted "I don't think my donation will make a difference"

OF COURSE it will! But I'll tell you what won't make a difference.......doing nothing.

 

I would like to think when a member joins Tinnitus Talk and gets support they become a proud member to be with us.

Once they get to know all about tinnitus they then start to think about what can be done to help find a cure or better treatment.

Some hope their time on here will be short and that their tinnitus would go away, so might not want to get involved.

love glynis

 

Success breeds success. No one ever solves a problem by doing nothing. Even if it’s a monumental challenge: no one climbs Everest whilst sitting on the sofa.

A pebble is tiny and insignificant, but drop a load of them into a torrent of water and they have the power to stop it. Suddenly, they become significant.

We are the pebbles.

 

I'm dropping in my 2 cents.

The people who voted "I don't have enough money to afford even the smallest donation" are lying to themselves.

Frankly, EVEN THOSE on welfare should be able to donate a couple of pounds or dollars or euros if they REALLY WANT to.

 

Depending on where they live, some people cannot even be "on welfare", you know. I guess your comment is quite easy to say when you live in a rich first world country. We are not all from Western Europe or the US.

 

An unpopular opinion but I personally agree with it. Unless you're a hobo living in a cardboard box you can afford to give £1. It just means giving up that one chocolate bar one day.

 

That's a great point @Julien87. One that I completely understand.

@Ed209 I've been somewhat hopeful that once we've chosen a beneficiary, we can "relaunch" the campaign and generate more donations.

I think donating to a specific research project will bring more money in.

 

I understand financial problems as I have been unemployed due to tinnitus since June last year.

But no one is SO poor that can’t donate a small amount! NO ONE!

So that’s a lot of BS!

Don’t buy one coffee or packet of chips, block of chocolate and there’s your donation money!

Lack of money is not a valid reason!

As I wrote in another thread it’s the lack of valid research that stops people from donating, myself included!

If Prof Tzounopoulos came out and said: I have a cure for tinnitus but need money, I’m 100% convinced that everyone would fork out according to their ability to support him.

 

I was thinking the same. We’ll have to wait and see what happens.

 

He's just a poor boy from a poor family.
Spare him his life from this monstrosity.

I'm doing research. I'm the Chief Scientific Officer @ MPP.

 

I believe there’s some truth to this. Firstly, let me make it clear that I know some people are genuinely struggling financially and that they should only give if they can afford to, and because they want to. We are not forcing anyone to do something that they don’t want to do.

However, when it comes to £1-£5, I believe more can afford it then they let on (let me restate that this doesn’t mean people should be pressured to donate, it doesn’t). Most here have access to the internet and a device to use it on which costs a lot of money. The caveat here is that one can borrow a laptop or phone to post here, but many of the regulars post too often for this to be likely. In which case, not being able to afford it seems unlikely for most.

It’s interesting to note that most people think that their money won’t make a difference, or that it won’t go to where it’s supposed to, which is what I expected. My argument would be this: what’s more important, the next bag of potato chips/snickers/sandwich/burger; the next magazine you read, or the chance to be named and involved with a project that is objectively doing something to help? No matter how small the odds are. What gives you a better sense of wellbeing?

Think about it logically. How much pleasure are you going to derive from reading a magazine or eating a chocolate bar? For the same amount you could have a lasting legacy in knowing you were involved with a tinnitus movement that aimed to shake things up. We are not saying we will outright cure tinnitus with the amount we have, but is that £1 - £5 really worth more to you than trying to help the condition you suffer from? Is the lasting pleasure from that donut you just ate worth more?

Again, I will restate that you should only donate because you want to. I’m just trying to understand the mindset of those who genuinely can afford to but don’t think it’s worth it. If you literally can’t spare £1 then the reason is legitimate. The same is true if you just don’t want to or don’t see any value. We are free to do as we wish.

 

People can be easily put off by having to register to donate or have a PayPal account etc.

I find text donating is simple and effective.

I find myself doing this to the likes of Oxfam and Warchild etc, and despite initial concerns I haven't ever been 'spammed' with lots of texts.

A pound or two is easy to give.

Just a thought... not sure on the practical side of how it works and how much of it makes it back to the charity!

 

Interesting hypothetical question: what if there was a campaign to raise a huge amount of money and involved some of the best researchers in the world, but only donors would have access to any of the findings, and/or treatment, if one was ultimately discovered.

Would you donate then?

 

People don't like to donate to research, but many will contribute to a compassionate need. Think Bill Gates and Warren Buffett. All the universities above have open checkbooks from their associated medical schools and from endowment funding. Regardless, Ed has done an amazing job and he should receive the highest honor and appreciation for his commitment.

 

I know you keep saying this, Greg, but from what I’ve read it seems that tinnitus research is chronically underfunded. In comparison to other conditions we are a minnow.

We had the chance to discuss where the fund should go and it didn’t have to be mainly Universities. We went with what the people want, as options, and they will get what the majority, ultimately, vote for. We have the opportunity to fund a new researcher (student) without the need to go through an institution. We can also invite any organisation to submit an application for the money. Imagine the possibilities if we all got behind it and generated a decent amount of money.

This is supposed to be about helping the Tinnitus cause; helping people out is awesome and totally admirable, but that’s not the aim of this. I have already helped sick children, and have given to countless other good causes. This time it’s all for tinnitus, because it is desperately needed, and it also raises awareness at the time. I’m not stopping anybody else from setting up a different fund that can meet all of your objectives. It’s something that can still be done and can coexist with this, or it could come afterwards.

I don’t understand all the criticism towards funding tinnitus research. We discuss it all day but don’t want to help fund it; I think it’s crazy, personally.

 

Yes fund more research. Also do your own research as well.

https://www.ncbi.nlm.nih.gov/m/pubmed/27012759/

 

@Ed209 I think that one problem people have with research is that up to 72% goes to administrative costs and more continued fundraising. One group of people who don't fall under this umbrella is alumni of universities who will give to the university that they graduated from.

The Bill Gates Foundation has said that they will not accept application consideration for most research. His commitment is about compassionate care for those who cannot afford it as with the children in Africa. The same with Opera.

I know a little about the differences between research and care giving as I was involved with this - my previous healthcare employer. Care compassionate giving over research giving always won hands down from healthcare workers and community.

 

Do you have a source for that? I imagine there are perhaps more useful metrics in there, because "up to 72%" could mean that 100 research projects were surveyed and that one poorly managed outlier ended up swallowing 72% in admin costs, while average/median could end up being single digit %.

I'm sure there are some admin costs, but putting in people's head the 72% number because it's a maximum (ie "up to") is doing a disservice to research funding because it paints stats in the most negative light possible: averages/medians are much more useful than maxima/minima to try and depict a global state. I'm sure there is no malice in your statement, but please understand the impact it can have.

 

@GregCA From my employment files
AAMC study - Costs of medical research - Ross McKinney MD

Cost Category
Building Costs, equipment, operations, maintenance - 26.7%
Administrative costs 26%

Remaining percentage is a component of research
Most to research salaries
----------------------------------------------------------------
For charities the administrative and fundraising numbers are higher.

Unless it's direct fundraising or sponsored such as by a bank. This is the only responsible way where all or (most) funds go directly to a cause or a compassionate cause. This is how our funds here were raised - minus GoFundMe expense from the donator. As to our funds being applied to research ------ will they be comparable to above costs of AAMC study - I don't know.

I'm not going to debate this more because it's unproductive and heart breaking, but when your phone rings for say a contribution for cancer research, the percentage the fundraisers get is often unreal - 60 minutes and 20/20 have aired stories on this in the past.

 

I’ve just got to point out that the amount we currently have, £4335, will go to the beneficiary with 100% of the total intact. The GoFundMe expenses are paid up front nowadays, same as JustGiving. I know it’s swings and roundabouts because you still pay towards the fundraising platform, but without it, logistically, it would be incredibly hard to raise money around the world. A £5 donation would cost 25p, so a total of £5.25.