Idea for Fundraising: Make People Listen to Tinnitus

[valeri]

@Ed209,

Here's an idea, just an idea! Feel free to ignore or think about it!

While being invisible is a huge disadvantage of tinnitus, I think the "good" thing is that it can be heard!

How about setting something on Facebook for example, with the choice of sounds and asking the viewer to possibly listen to it through the headphones for 5-10 minutes while going on with their life!

"Dare to bare" or donate a dollar or whatever amount!

Would this be doable?

Even if we start with people around us and either film their reaction or something, I don't know!

It needs to be "catchy" somehow!

What do you think?

 

[annV]

asking the viewer to possibly listen to it through the headphones for 5-10 minutes while going on with their life!

I would never have done that pre-tinnitus.

I don't think healthy ear people would try that.

 

[Ed209]

@Ed209,

Here's an idea, just an idea! Feel free to ignore or think about it!

While being invisible is a huge disadvantage of tinnitus, I think the "good" thing is that it can be heard!

How about setting something on Facebook for example, with the choice of sounds and asking the viewer to possibly listen to it through the headphones for 5-10 minutes while going on with their life!

"Dare to bare" or donate a dollar or whatever amount!

Would this be doable?

Even if we start with people around us and either film their reaction or something, I don't know!

It needs to be "catchy" somehow!

What do you think?

First of all it's good to see you thinking of ideas, but I don't think this one will work. People won't even click like or share so there is zero chance of getting them to wear headphones with a tinnitus noise playing, and this also brings an element of risk. What if someone acquires tinnitus by maybe playing it too loudly or by doing something else that's dangerous. It's risky to involve healthy ears when it's out of our control.

In my experience of doing fundraisers, people are naturally selfish and need a reason to be involved, which is why auctions and raffles work so well. An idea I had was to do a promotion type thing for artistic people. 'Jam for tinnitus' so to speak. The idea being we get people to like and share our message about tinnitus and ask that they make a small donation, and at the same time they can promote anything they've been working on. It could be a new song, a piece of artwork, a music video, a new website etc.

'Jamming for tinnitus' gets musicians involved as they are a key demographic. It could literally be just a video of someone playing their best chops, which musos love. We're all secret show offs. As they get recognition and an ego boost, and some self-promotion, tinnitus also gets a mention and possibly a donation as part of the reason to share for others to join in.

Even this only has a very small chance of working. Sometimes just a simple idea of doing a 10k run or half marathon whilst getting friends and family to donate is all it takes to get lots of people involved. Again, there has to be a reason to donate. People are less likely to give just for the sake of giving, and people are more likely to donate face to face if you're carrying a sponsor form.

 

[annV]

@Ed209

Jam for tinnitus has a good sound to it!

 

[David]

While being invisible is a huge disadvantage of tinnitus, I think the "good" thing is that it can be heard!

How about setting something on Facebook for example, with the choice of sounds and asking the viewer to possibly listen to it through the headphones for 5-10 minutes while going on with their life!

We did do something similar once. Before my time - to raise awareness we once sent an MP3 player with instructions of how to use to journalists during Tinnitus Awareness Week with representative sounds of tinnitus included. We encouraged them to write a story whilst listening to one of the tracks. There were some very strong stories on what it must be like to live with 24/7.

May well be worth revisiting

 

[David]

Like Jam for Tinnitus @Ed209 ! We're working on some ideas too, to both raise awareness and funds - hopefully will be launching in early 2019.

 

[glynis]

How about a basic games night with family, whoever loses puts money in a box for tinnitus?

Raffles go down well and people always like to have a go?

Sponsored walks?

Sponsored weight loss?

Get wet with a car wash?

Fill a pop bottle with money and send the money in?

Shoe shine?
Head shave?
Food challenge?
Bucket collections?

Paint a picture about tinnitus, emotions etc. and put it on Facebook and see if you can raise money from it?

 

[glynis]

@David, @Markku, @Steve, @Hazel, @Karen:

Is this a project we can work on together, what better way to get awareness on tinnitus and hearing protection?

Plug'em campaign into schools!

Go in to a school and talk to a year group in person and take along BTA and Tinnitus Talk and Tinnitus Hub information.

We have the knowledge, paperwork, and people to go in between us I'm sure, and could be something to launch at #TinnitusWeek 2019.

I work in a school with children already...

love glynis

 

[valeri]

@Ed209,

I understand there are some logistics issues but we need something to engage wider population.

Also I agree there are some risks with playing noise into someone's ears.

I can't comment on your idea, as a musician I believe you know the industry and people involved.

Just wondering if anything was tried with Inspiral Carpets after their drummer Craig Gill recently committed suicide? Do you know them?

Another scary tactic to aim at tinnitus community, and I'm not sure if this is morally or ethically accepted, is to use Danny's case and simply say: Are you next?

Something along those lines: with just one sentence to say you can go from mild to suicide!

Bad and ugly is what needs to come out if you want to get people's attention!

Ed,

I've done this all few years ago, I understand your frustration because we went through the same stuff, I'm really happy to help but only for the right cause!

 

[Ed209]

@valeri, I suppose it really depends what your main aim is? Is it to raise awareness or to raise money? I know the answer is both but your ideas stray more towards shock tactics involved in prevention more than raising money for research.

We can't use Danny's story because we still don't know what his cause of death was (as far as I'm aware), and it would have to be a family decision. I doubt they would approve of your idea.

I know of Craig Gill and The Inspiral Carpets, and have since the 90's. I didn't know him personally but I know his family did a JustGiving campaign in his memory that raised £1030.

A multipronged approach is best. Significantly more awareness needs to be raised and likewise for money going towards curative research. Strictly raising awareness requires different tactics in my opinion with one of the best ideas being to do school talks across the country/ies (like has been mentioned). It's difficult to convey to people what's it's like short of actually giving them tinnitus. A sound played into someone's ear won't drive them as crazy as you think, because psychologically, they know they can switch it off. It doesn't invoke the same panic and fear response as it does in tinnitus sufferers, and it doesn't give anyone an insight into the sleepless nights, the pain of losing ones career/life's work, the crippling anxiety, hyperacusis (or the extreme pain it can cause) distorted sounds, the reactive nature of certain sounds, phonophobia, etc, etc. To the person having the sound played in their ear, it's just a temporary moment of having a bit of noise played to them. They can experience similar things in other ways: by going on a flight, static noise, alarms, etc. The difference is huge and the noise is just the tip of the iceberg.

You have to realise the public aren't interested in our cause. To put it another way: they couldn't care less! The way to make people become involved in something is to engage with them; make them a part of something that's interesting and/or fun. You engage them by grabbing their attention and getting them involved; that's how you raise money. The 'Jam For Tinnitus' idea has been knocking around in my head for a long time. If enough musicians jump on the band wagon we could potentially start a movement (it would still be really difficult). The message of tinnitus would be mentioned in every shared video and money could be raised on the back of it. A lot of musicians themselves have tinnitus so it's a good demographic to target. There's also no reason why other artistic people couldn't get involved by showing off their artwork. I suppose it would then be more like 'paint for tinnitus' or 'craft for tinnitus', but it works on the same principle.

Over the years I've seen so many adverts that play a tinnitus noise in order to shock viewers, but I don't think it has a great impact. Or at least, not enough to change people's behaviour around loud noise. In fact, AoHL ran a TV Ad fairly recently in the UK to raise money for research, I'll post it below:



They also produced these prevention Ads:

 

[valeri]

@valeri

I know of Craig Gill and The Inspiral Carpets, and have since the 90's. I didn't know him personally but I know his family did a JustGiving campaign in his memory that raised £1030.

That's a lousy amount, really sad.
I'm really not sure what can be done!

 

[Ed209]

That's a lousy amount, really sad.
I'm really not sure what can be done!

Unfortunately Val, that seems to be a common theme when it comes to raising money for tinnitus, no matter who the beneficiary is.

I agree, it's difficult to decipher what will work on a massive scale.

 

[valeri]

Unfortunately Val, that seems to be a common theme when it comes to raising money for tinnitus, no matter who the beneficiary is.

I agree, it's difficult to decipher what will work on a massive scale.

Can't BTA engage Chris Martin again?

But not to record a song/album (don't remember what it was) but to initiate some action for fundraising!

Considering how many musicians have tinnitus I can't believe that none of them are bothered by it enough to want treatment/cure!

 

[Ed209]

Can't BTA engage Chris Martin again?

But not to record a song/album (don't remember what it was) but to initiate some action for fundraising!

Considering how many musicians have tinnitus I can't believe that none of them are bothered by it enough to want treatment/cure!

I think someone like Paul Gray would be a better candidate, but I found it difficult to find contact details for him, although he is on Twitter and LinkedIn (but I'm not).

If you're unfamiliar with him, read these links or google his name along with tinnitus. There are a lot of articles and interviews out there that are extremely honest, and revealing, about his battle with tinnitus. He is also a regional organiser for the musicians union.

https://www.walesonline.co.uk/whats.../cardiff-punk-rocker-didnt-leave-14195509.amp

https://www.walesonline.co.uk/news/local-news/former-professional-bass-player-paul-2036407.amp

http://www.dailymail.co.uk/health/article-2987344/My-tinnitus-bad-click-light-switch-agony.html

https://www.hiddenhearing.ie/blog/clicking-a-light-switch-was-agony/

http://www.legendaryrockinterviews....-the-damned-talks-british-hard-rockpunk-rock/

 

[New Guy]

I like Strawberry Jam. Put me down for two jars toward the cause.

 

[valeri]

@Ed209

Just wanted to ask if you've come up with a plan or any new ideas that we can put into practice?

@Markku

Can we run a survey to see what would be the response of members to donate directly to prof Tzounopoulos? (If you think it's worth it)

 

[David]

Can we run a survey to see what would be the response of members to donate directly to prof Tzounopoulos? (If you think it's worth it)

This is an interesting idea. I've often wondered if crowdfunding for tinnitus research would be feasible. I think it would be worth contacting Prof Tzounopoulos, asking for a project spec and the amount needed (think you need a figure, people don't donate to bottomless pits for research) and see if there's the appetite from the tinnitus community to fund the work. Probabaly best to do it outside of the BTA, to avoid claims of bias and whatever else but there's websites that will allow you to do that.

 

[Deamon22]

This is an interesting idea. I've often wondered if crowdfunding for tinnitus research would be feasible. I think it would be worth contacting Prof Tzounopoulos, asking for a project spec and the amount needed (think you need a figure, people don't donate to bottomless pits for research) and see if there's the appetite from the tinnitus community to fund the work. Probabaly best to do it outside of the BTA, to avoid claims of bias and whatever else but there's websites that will allow you to do that.

That is a great idea, and maybe better than just donating individually.

 

[valeri]

This is an interesting idea. I've often wondered if crowdfunding for tinnitus research would be feasible. I think it would be worth contacting Prof Tzounopoulos, asking for a project spec and the amount needed (think you need a figure, people don't donate to bottomless pits for research) and see if there's the appetite from the tinnitus community to fund the work. Probabaly best to do it outside of the BTA, to avoid claims of bias and whatever else but there's websites that will allow you to do that.

I still haven't heard back from @Markku if he thinks this could be realised.
It would be good to test the water so to say.

 

[Markku]

I still haven't heard back from @Markku if he thinks this could be realised.
It would be good to test the water so to say.

Honestly the current fundraiser in Danny Boy's memory is quite a lot to tackle with right now, especially since we have the Expo coming up next week which keeps us busy.

Moreover, I don't think another concurrent fundraiser along with Danny Boy's one has appreciable chances for success.

It's also worth noting that the donors to Danny Boy's campaign/the community here at Tinnitus Talk can be part of the selection process which research project the funds are allocated to.

However, I agree re: testing the waters, so maybe later on as an experiment it could be interesting to fundraise for a specific research project (so donors would know what project the funds go to the moment they donate, without any future selection process among the donors).

Feel free to reach out to Prof Tzounopoulous and ask for the details @David brought up (project spec and how much he is looking to raise).

Finally, I'm quoting myself from July 30 this year:

The latest update I have on that is from December 2016. Back then Prof. Tzounopoulos and his team were looking to get a preclinical (animal testing) trial off the ground - that, in his estimate, would have required $500,000 - $1,000,000. It was @DebInAustralia who was in touch with him. Deb, do you happen to have any more recent updates?

He has previously received funding mainly from the Department of Defense and from the National Institute of Health.

Assuming a successful preclinical trial, the amount of money needed for phase 1-3 becomes so significant that hardly any community effort could pull it off - however, at that point, maybe a pharma would pick it up. That could happen indeed.

It would be pretty fantastic, to say the least, if the tinnitus community was able to come together to fund that sort of preclinical trial, but I do have my doubts. We're talking the kind of of money ATA has in its annual budget, just to put it into perspective.

However, if Tzounopoulos also had other supplemental funding sources, maybe the tinnitus community could play a meaningful role in raising funds to help his team reach their goals.​

@DebInAustralia contacted Prof. Tzounopoulos after my message above, and got the following information in July 2018:

"Very sad news… I am also devastated by this tragedy (Danny)…

Our studies continue toward discovering and developing scientific Kv7.2/3 channel openers.

Things are going well, and we have a couple of new compounds that will hopefully address retigabine's toxic effects...

If you decide to donate money to my research program, please visit my Center's site at:

http:/phrc.pitt.edu/support for how to get this done.

Unfortunately, due to IP rights, patents etc, I cannot share this information (about new compounds) at this point..

But novel compounds are at the preclinical development stage."​

 

[Ed209]

I agree with @Markku, @valeri. My original plan, which I discussed with Markku, was to find a research team and donate directly to them and this was going to take a lot of planning. However, when Danny died I thought enough was enough and felt compelled to do something there and then. The quickest and easiest way to raise significant money is via crowdfunding, so the BTA had to be the beneficiary - which I personally see no problem with, but unfortunately, many here do. Even though the BTA were picked by default (no other organisations such as TRI are listed on any crowdfunding platforms) we got in touch with David Stockdale and devised a plan to make sure 100% of the money would go towards research, and that we could choose who the beneficiary would be.

This further demonstrates that the BTA are our allies, and if only more people would get their heads out of the past and become more forward thinking, then we could potentially raise a decent amount of money that would have a direct impact. That's real research funded by us, the tinnitus community. This gives us a unique opportunity to actually fund action instead of just talking about it, and there is quite a monumental distinction between the two. One actually achieves something and the other doesn't.

I know we all want more research, so if I'm being honest, I am/was disappointed by the amount of people who got involved (so far!), but it didn't surprise me. If I ever came across as badgering (which I've seen people say) then that wasn't my intention at all; that was my frustration coming through that people aren't prepared to help themselves even when I gave them the opportunity to donate £1. Instead, the same old arguments have raged and we haven't really united or got as far as I'd have liked. I did this to help the tinnitus community, not to harass you all. I don't personally gain anything and neither do the BTA or Tinnitus Hub, but I can tell you all first hand that fundraising for tinnitus is insanely difficult. We've spent hours/days on this, contacting every organisation under the sun, trying to get more awareness out there. However, I'm guessing most people would rather buy a cheeseburger than donate to tinnitus research (based on the stats).

To everyone who did donate, though, you are all a part of something special and can take stock in the fact that you have influenced an outcome. You have done something that is REAL, and will objectively help in some way.

Thanks for the interest Val, I know your intentions are good and I have previously spoken to you via PM, so I know you have a good heart. I hope you're feeling better.

 

[Jazzer]

@Ed209 - I believe the badgering comment came from me.
With a considerable growing debt hanging over me, and no income whatsoever, coupled with family responsibilities, my own donation needs to be made physically, money in the box, rather than virtually through a debit card, which appears on my bank statement.
I do appreciate that fundraising is a tough business, and the strategy needs to be proactive, but my point is that none of us knows the other's predicament.
I am personally not interested in donating one pound, or in preferring to buy a lousy cheeseburger.
One pound goes nowhere.

When I walk into the supermarket and a well meaning guy literally waves his collection box up under my nose, I have to resist an urge to poke it up his arse.

Nobody knows what donations we have made in the past, or what we are capable of giving now.

When people are very seriously 'strapped for cash' it can touch a raw nerve.

Nobody wants a cure more than me, and I will do my best, in my own way.

Having said all of the above, I know you are doing a great, and very tricky job Ed,

Best wishes,
Dave x
Ex Jazzer

 

[Ed209]

@Ed209 - I believe the badgering comment came from me.
With a considerable growing debt hanging over me, and no income whatsoever, coupled with family responsibilities, my own donation needs to be made physically, money in the box, rather than virtually through a debit card, which appears on my bank statement.
I do appreciate that fundraising is a tough business, and the strategy needs to be proactive, but my point is that none of us knows the other's predicament.
I am personally not interested in donating one pound, or in preferring to buy a lousy cheeseburger.
One pound goes nowhere.

When I walk into the supermarket and a well meaning guy literally waves his collection box up under my nose, I have to resist an urge to poke it up his arse.

Nobody knows what donations we have made in the past, or what we are capable of giving now.

When people are very seriously 'strapped for cash' it can touch a raw nerve.

Nobody wants a cure more than me, and I will do my best, in my own way.

Having said all of the above, I know you are doing a great, and very tricky job Ed,

Best wishes,
Dave x
Ex Jazzer

No Dave, I wasn't thinking of you at all as we've already discussed this via pm. The badgering comment has been used since by (I believe) Tuxedo Cat and maybe someone else.

I'm not out to start anymore arguments but I did want to make it clear that I'm not forcing anyone to do anything; I am merely reflecting the contradiction that we face in the tinnitus community: that is, we want treatments but don't want to help pay for them. If I came across as badgering then I apologise but people must see the paradox here? If one isn't prepared to contribute towards the research required to find a treatment, then in my opinion, any words of complaint at the lack-thereof are empty and worthless. You can't complain about both. My enthusiasm was entirely aimed at helping people, nothing more, nothing less.

I'm sorry that some on here saw my approach differently, but after years of talking I got tired and wanted to see some real, tangible, things happening.

I wish you all the best.

 

[Ed209]

I am personally not interested in donating one pound, or in preferring to buy a lousy cheeseburger.
One pound goes nowhere.

As a side-note, this is a mental obstacle that we need to eliminate. The problem is that if the majority believe this then nobody will ever donate a small amount. After-all, a pound goes nowhere. And yet, we have easily amassed at least 50,000 unique views (click through rate doesn't reflect this). Imagine if all of those people gave £1; that's £50,000 straight away. Imagine if people gave £2 each, that's £100,000. In fact, if everyone gave a fiver we could potentially fund a phase 1 trial. If people are going through hard times then £1 maybe possible for them and shouldn't be seen as worthless. If £1 isn't possible then we can help in numerous other ways from holding independent fundraisers, to simply liking and sharing the campaign on social media. There's no excuse not to help, really, because everyone can contribute in one way or another.

However, this is human psychology. People follow what they believe the majority will do and until they start to believe that the majority will donate £1, then most people won't do it. The voting system for parliament is no different; people often refer to tactical voting instead of voting for who they want. It works on the same principle. The trick is to make enough people believe it's possible and then you can sway the majority to take action. The problem, however, is that this is incredibly hard to accomplish.

 

[Deamon22]

Since I cannot help with much else (no medical background, no connections to researchers whatsoever since tinnitus is something completely out of my line of work), at least I can help with money for Tinnitus Talk and funds like this.

 

[Ed209]

Since I cannot help with much else (no medical background, no connections to researchers whatsoever since tinnitus is something completely out of my line of work), at least I can help with money for Tinnitus Talk and funds like this.

We all have the power to influence the world, no matter what our background is. I think this speech from Steve Jobs is pretty powerful and perfectly demonstrates this:

 

[Deamon22]

We all have the power to influence the world, no matter what our background is. I think this speech from Steve Jobs is pretty powerful and perfectly demonstrates this:

Absolutely, however not having medical or scientific background and English being my third language, being able to help is of course sometimes limited. But I try, whatever brings us closer to a treatment.

 

[valeri]

We all have the power to influence the world, no matter what our background is. I think this speech from Steve Jobs is pretty powerful and perfectly demonstrates this:

I'm not sure how but if there is some plan of action many people could contribute in different ways.

@Greg Sacramento I like your idea of writing to senators, this should be expanded to all countries where Tinnitus Talk members live.

I would be happy to help.

Can we have some template letter that we could all use?

 

[Ed209]

I'm not sure how but if there is some plan of action many people could contribute in different ways.

@Greg Sacramento I like your idea of writing to senators, this should be expanded to all countries where Tinnitus Talk members live.

I would be happy to help.

Can we have some template letter that we could all use?

We can change the world by acting on the issues that concern us most, or by doing things that can improve our lives. In terms of tinnitus that can be by:

• Lobbying governments/MPs/Senators, etc •Fundraising for tinnitus research
• Securing funds from elsewhere
• Creating awareness over social media
• Breaking any stigma surrounding T and the use of earplugs
• Promoting the message through our schools (something my wife does)
• General campaign work

The biggest issue - as I've posted above - is that humans generally don't act individually unless they know others are doing the same. It's incredibly difficult to get large numbers of people to work towards the same goal as things often become fragmented. However, if everybody believed it was possible to make fundamental changes then you'd see an uprising of quite some magnitude, because our tribal nature is quite powerful when we feel something is possible. I know this is a bit from left field, but look at all the sex scandal cases in recent times. People generally don't speak out until one or two very brave souls open the door, and then inevitably, the floodgates open when everyone else starts to believe a change (and justice) can happen.

We all have the power to influence and if we all become active, the numbers would make it impossible for powerful people to ignore. This is exactly why government petitions in the U.K. have to be discussed in parliament if they reach 100,000 signatures. We could do a petition but it would depend on what basis. Something along the lines of: 'make children aware of the dangers of loud noise by educating them in school about it.' You could then provide evidence of the billions it costs the economy. I can only see the problem getting worse with the iPod/iPhone generation where we have many children and young adults permanently attached to earbuds, and beats (headphones).

If you take all of my bullet points above and imagine us all doing those things then we would have a real movement.

 

[Samantha R]

As a side-note, this is a mental obstacle that we need to eliminate. The problem is that if the majority believe this then nobody will ever donate a small amount. After-all, a pound goes nowhere. And yet, we have easily amassed at least 50,000 unique views (click through rate doesn't reflect this). Imagine if all of those people gave £1; that's £50,000 straight away. Imagine if people gave £2 each, that's £100,000. In fact, if everyone gave a fiver we could potentially fund a phase 1 trial. If people are going through hard times then £1 maybe possible for them and shouldn't be seen as worthless. If £1 isn't possible then we can help in numerous other ways from holding independent fundraisers, to simply liking and sharing the campaign on social media. There's no excuse not to help, really, because everyone can contribute in one way or another.

Absolutely spot on. If only.