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

[Ed209]

"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 completely understand what you are saying, Jen, but I have personally emailed every single person to thank them.

I cannot logistically thank everyone once a month and it's not possible even if I wanted to as I can only thank people individually after each donation; I do not hold anyone's personal contact details. I also think that it is a little extreme to thank people every month, but I do totally understand the need to be thanked and am always immensely grateful for every donation in all the campaigns I've been involved with. Everyone has received an email regarding this thread (and discussion), so we are all involved in every step of what we do with our money. I want to make sure that every single person feels they can have their say on all matters. I have donated to 14 causes on JustGiving and 5 or more via other platforms, and haven't received a personal thank-you from hardly any of them (bar maybe a couple) but that would not stop me giving to something I believe in.

The lack of cohesion as you said is really obvious and is something I have no answer for. I'm trying to figure out the reason, but it alludes me. PayPal may account for the odd person, but I don't think it can be blamed for 99.8%, which is the approximate stat indicating the amount of people who decided it's not worth it (out of a predominately tinnitus-based audience). I saw some of the Facebook posts, and if I'm being honest, it makes me want to pull my hair out. I notice many talk about wanting a cure but this doesn't convert into donations.

Do you have a preference on where the money should be spent, Jen? Any novel ideas that could make our money go the extra mile?

All the current feedback is really appreciated.

 

[Samantha R]

@TuxedoCat @Ed209,

I simply don't get the lack of support from the tinnitus community.

Like you said Ed, people commented on the post that was shared on the BTA and also on Tinnitus Hub about how they need a cure, how horrible tinnitus is - but not one person donated. The thread got off topic, with people going on about things they've tried for their tinnitus and so on....

I agree that tinnitus is not severe for a large number of sufferers, so maybe that's why we have difficulty getting support.

I'm also not sure why the largest tinnitus support group on Facebook does not allow fundraising. They allowed me to mention the fundraiser, but that got all of 5 comments and one of those was saying it might be a scam... sigh...

If the admins of the page can validate the fundraiser, then I don't understand why it's not allowed.

If people are members of a Facebook support group then they are obviously the ones who are suffering, surely a few of those would also donate...

I don't get it.... and I find it frustrating.

I do agree with you @Starthrower. Engaging with donors is very important, even if they are one off donors and especially if they are regular donors.

Also, not being harassed for more money is important too. I am extremely sorry you had such a poor experience with the ATA... how utterly disappointing.

 

[Ed209]

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

This has been the case from the very beginning. We have always made it clear that we would be democratically discussing where the money goes and that all donors can have their say. It seems quite clear that only a few have read the main description because there are still comments saying it should be given to research and not the BTA? I have seen this a lot as well.

I want to shout from the rooftops that this is for the benefit of everyone with tinnitus. It is a democratic process and always has been.

 

[valeri]

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

I've been corresponding with his sister after seeing her post about the fundraiser.

He battled tinnitus for 20 years.

Very tragic.

 

[valeri]

@Ed209

One thing that puzzles me is the lack of engagement from musical industry.
2 musicians who committed suicide due to tinnitus have been mentioned in this thread but the overall solidarity from colleagues hasn't happened.

Is that because they were not famous enough or something else?

 

[Ed209]

If anyone wants to be hands-on I welcome you to join the GoFundMe team. You are all free to help thank people and contribute in any way you think will help. This is a community effort. If you do join just make sure that all updates are discussed between team members.

Edit: You can thank people again after a certain amount of time has passed. However, I think doing this once a month can come across as pestering, or hinting, that you want more money. I believe sincerity in the initial thankyou is enough without spamming people's inbox on a regular basis. All other updates are sent universally to all donors and the main campaign page.

 

[glynis]

@Ed209,

I love your story and I know you have been through a lot with your chest.

You have come a long way and you're truly a remarkable person and a big part of Tinnitus Talk.

love glynis x

 

[Ed209]

@Ed209

One thing that puzzles me is the lack of engagement from musical industry.
2 musicians who committed suicide due to tinnitus have been mentioned in this thread but the overall solidarity from colleagues hasn't happened.

Is that because they were not famous enough or something else?

I have no idea Val, and this is the million dollar question. It's because it involves the magic word 'tinnitus' which seems to stop people donating no matter what their background is. I note when musicians have other problems people rally round, donate, and hold benefit converts. Off the top of my head, I can think of Jason Becker and Scott Sorry, who have both received lots of money for non tinnitus related illnesses, and there are many more examples.

The same is true for veterans and regular people who have tinnitus. Their fundraisers don't generate much either and this demonstrates the endemic nature of this problem. The question we need to know the answer to if we want to be successful, is why? What is stopping people?

I simply don't get the lack of support from the tinnitus community.

Like you said Ed, people commented on the post that was shared on the BTA and also on Tinnitus Hub about how they need a cure, how horrible tinnitus is - but not one person donated. The thread got off topic, with people going on about things they've tried for their tinnitus and so on....

Exactly Sam. It's a mystery isn't it? And thanks for helping by the way you have been a great asset. I saw your posts and I was really happy to see you helping by debating and reaching out to people. By the way, did you get my emails? I noticed the thank-you email for me, from Glynis, went in my junk folder so I never saw it.

Right, I know this has gone off track a bit, but it's all good discussion. Do any of you have any more ideas about how we can use the money we have?

 

[David]

Hi All,

don't really want to hijack this thread with a discussion about why fundraising for tinnitus is such a challenge (it is). If there's enough interest in discussing it and someone wanted to start that thread, I'd be happy to respond to it - so long as we didn't get into BTA bashing! That said constructive criticism is always welcomed.

 

[Kelvin]

Raising money for tinnitus is difficult, simply because almost everyone I have ever spoken to about mine sees it as a minor annoyance. Most think it's funny!! They simply don't understand how hard it is to "Keep Calm And Carry On" with these hideous noises in your head. It's unseen.

This is why awareness is the 'key' to the money and then research.

If Elon Musk or another billionaire was struck down with tinnitus tomorrow he may well donate millions to research but if he is 'unaware' of what it's like, and how it destroys lives he never will.

I appreciate Danny's fund is earmarked for research but as this thread proves it's hard to allocate.

Danny was a hell of a researcher himself and to me the idea of a research gift to a student studying tinnitus is a great idea and very "Danny Boy"!

Hope all you Whistlers, Ringers and Hissers are having as good day as possible.

Big love X

 

[TuxedoCat]

Hi All,
don't really want to hijack this thread with a discussion about why fundraising for tinnitus is such a challenge (it is). If there's enough interest in discussing it and someone wanted to start that thread, I'd be happy to respond to it - so long as we didn't get into BTA bashing! That said constructive criticism is always welcomed.

@Ed209

You have a base of 160 people who donated to the Danny's fund. As I said before, that needs to be cultivated so it grows. OK, it's difficult to get donations for tinnitus, we see that repeatedly - get over it! Try to find ways that work, for that reason I'm in favor of hearing what BTA have to say, to learn from their experiences and to identify ways of engaging those 160 donors so they become repeat donors. There may be issues unique to the tinnitus population that we should know about and BTA may share with us so we are not reinventing the wheel.

Already, feedback from Starthrower suggests to me that a thank you generated from GoFundMe may be viewed as being too impersonal.

@Ed209, you are the lead here, do we need to nominate you to be Chairman?

TC

 

[Ed209]

You have a base of 160 people who donated to the Danny's fund. As I said before, that needs to be cultivated so it grows. OK, it's difficult to get donations for tinnitus, we see that repeatedly - get over it! Try to find ways that work, for that reason I'm in favor of hearing what BTA have to say, to learn from their experiences and to identify ways of engaging those 160 donors so they become repeat donors. There may be issues unique to the tinnitus population that we should know about and BTA may share with us so we are not reinventing the wheel.

Already, feedback from Starthrower suggests to me that a thank you generated from GoFundMe may be viewed as being too impersonal.

Hi TC, there's around 140 donors as a lot have given more than once. I'm still confused as to why you're telling me to get over it. It's not about me getting over it as I don't benefit in any way. I'm only trying to present the facts to the tinnitus community, as they stand, so more can help if they feel this is important to them. This is something we should all want to improve if we want to see things happening. All suggestions can be implemented if you add yourselves as team members. Otherwise it's fine to ignore this thread and the campaign and carry on with your lives if you don't believe in it. There are no hard feelings; this has always been about helping people. However, I feel like the workload of this campaign isn't doing my own health any favours at the moment, as my dad's health is declining, and my own health problems are getting worse.

I will continue to fight for tinnitus sufferers, so I'd appreciate all the help I can get.

I started this for Danny and all the poor souls who lost their lives to this condition.

 

[TuxedoCat]

However, I feel like the workload of this campaign isn't doing my own health any favours at the moment, as my dad's health is declining, and my own health problems are getting worse.

Hello Ed,

I think your health and the health of your family is extremely important. I can relate to that - my mother is 94 and her decline has been very slow. She lived with me for 3 years until she fell and broke her hip. That was 4 years ago - she's been in a care facility since then. I went to see her yesterday, even though she was dressed and getting around in her wheelchair, she could barely carry on a conversation with me, kept forgetting who I was, complains she can't see, can't hear and on and on. I don't have any brothers or sisters who could lend a hand or give me moral support. Meanwhile, I've developed health issues of my own.

What I was trying to say, and obviously not very well, is this - instead of worrying about all the thousands out there with tinnitus or those with a lot more money who didn't contribute, and knocking yourself silly trying to figure out what would make them contribute, take the pressure off yourself and just focus on the 140 who did contribute. Maybe it's time to just finish this campaign with the 4,000 GBPs that been raised so far or maybe just try to get to 5,000 for a nice round figure.

Later on we can do a survey or ask those people that did contribute to Danny's fund if they would be willing to donate 3 times a year. Perhaps we can expect to raise 3 - 5,000 GBPs each time. Then use the model you're using for this campaign - involve the donors in deciding how to spend the money. Is it 3 separate donations to projects or 1 yearly project. Send them updates or topics for discussion in between each of the campaigns. Do we continue to use GoFundMe or can BTA offer an alternative, blah, blah, blah. Others on the team can volunteer to take on the tasks, or you can parse them out so it's not all on you and affecting your health.

I think it's up to ATA and BTA to find the big donors and manage strategies to fundraise and increase donations. If we choose to continue with BTA we will become one of their donors. They have the people, the talent and the time to take on the larger issues.

Finally, I do apologize for saying get over it. I hadn't yet viewed the discussion going on about questions for the speakers at the Expo. I actually came back here to edit out that line but was too late.

For now I will take up lurking!

Thanks again for all you do, TC

 

[glynis]

Hi @Ed209,

Tag me into anything I can help you with regarding fundraising and Daniel's Memorial fundraising.

I have the time to do it...

love glynis x

 

[Ed209]

I think your health and the health of your family is extremely important. I can relate to that - my mother is 94 and her decline has been very slow. She lived with me for 3 years until she fell and broke her hip. That was 4 years ago - she's been in a care facility since then. I went to see her yesterday, even though she was dressed and getting around in her wheelchair, she could barely carry on a conversation with me, kept forgetting who I was, complains she can't see, can't hear and on and on. I don't have any brothers or sisters who could lend a hand or give me moral support. Meanwhile, I've developed health issues of my own.

Sorry to hear this; family health issues are never good and present some of the most difficult challenges a person can face.

 

[TuxedoCat]

Sorry to hear this; family health issues are never good and present some of the most difficult challenges a person can face.

Thank you, couldn't agree more. It does help to stay occupied with things of interest.
My mother is receiving good care, better than I could do on my own.

Please, take care of yourself. Many here, including myself, are willing to help.

TC

 

[valeri]

Personally I think there's few things:

1. Tinnitus is not seen as something significant and it really isn't for the majority of those who have it

2. Over 90% of general population has never even heard of it or knows someone as described above, so not significant again

3. Tinnitus sufferers are not convinced there is a valid cause to donate to. Just because some person committed suicide is not a reason big enough to donate.
They feel the money donated will change nothing which really is the truth!

@Ed209 and @Jazzer, as musicians are you able to prove around your industry why is there such a lack of interest to do anything?

Also is it possible to contact members of The Inspiral Carpets or Craig's wife to see if they would be willing to join.

I can ask Michael Haar's sister if her brother's band mates would be willing to do more!

She has nothing but words of praise for ATA and that's where their money will go yet again.

 

[Samantha R]

@Ed209
Yes, I got your messages, thanks so much.
It was nice to receive a personalised thank you each time I donated.

I'm happy to help in any way I can.

 

[Starthrower]

What personal information made you hesitate?

Way too much @GregCA so I can imagine those with the idea to donate on the first view would be hesitant and perhaps decide not to donate. That split second of second thought - loses donations.

Phone number, cell phone number, address and so on. This did not happen when I donated to Tinnitus Talk's site. So that impulse to donate happened.

Just my personal experience.

 

[TuxedoCat]

I'm also not sure why the largest tinnitus support group on Facebook does not allow fundraising. They allowed me to mention the fundraiser, but that got all of 5 comments and one of those was saying it might be a scam... sigh...

Hi Samantha- Which one is the largest support group on Facebook? I tried to start a conversation with you but keep getting an error message. Thanks, TC

 

[Samantha R]

@TuxedoCat,

That's strange about the conversation, my settings are set up correctly as far as I can see.... ?

I think the largest group is "Tinnitus Sufferers". There is over 20,000 members.

I actually posted in there on Monday just asking for feedback on why people do or don't contribute to a tinnitus charity.
One person responded saying that they select "Amazon Smile" for their donations. This isn't a donation as such, it's where a small percentage is donated by Amazon to the charity of your choice after you've made a purchase.

When I responded and asked if she'd make an actual donation, she replied "Possibly".

Then I got a private message from the "admin" of the page asking what I was doing with regards to my response to the person mentioning Amazon Smile.

I explained, and then asked if I could create a poll instead of the post. She said "please don't create a poll", as well as reminding me that they don't allow fundraising in the group (which was not what I was trying to do).

So I just deleted the post and removed myself from the group. It was getting me down anyway always seeing negative posts pop up on my Facebook newsfeed.

Anyway, I guess some things might never change.

I'll wait until David can respond in regards to his experiences with fundraising for tinnitus, should be interesting.

 

[TuxedoCat]

So I just deleted the post and removed myself from the group. It was getting me down anyway always seeing negative posts pop up on my Facebook newsfeed.

I find the same with the Facebook groups so I don't go there very often. I never joined Tinnitus Sufferers, probably because of a subconscious desire not to be a "sufferer".

I'll wait until David can respond in regards to his experiences with fundraising for tinnitus, should be interesting.

Indeed, no doubt TT and BTA's experience will be similar, I'm curious to see if it's for the same reasons.

TC