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

[Ed209]

I thought it was time to make a thread for donors to begin the process of discussing where we want the funds to go. It may be best to throw out some ideas and then debate them. If we can then gather a list of our favourite possibilities we could open up a poll and take votes.

How does that sound?

 

[Greg Sacramento]

@Ed209 I have no preference, maybe to Tinnitus Talk.

A side note. I'm thinking of sending letters to 2 of the 100 US Senators in the USA to add a one dollar donation to the Federal Tax Form donation list. There's millions with tinnitus in the USA.

 

[Kelvin]

I would say 'awareness' is key and if people like Danny had more compassionate help when they seek it then some lives may be saved. Not sure how you do that though? Maybe someone else will?

It would seem suitable legacy for him, Danny Boy's Tinnitus Awareness Fund. Maybe a simple "Tinnitus Awareness App" could be developed for Doctors and ENTs etc.

As a donation to research (whilst commendable) it will be a drop in the ocean and lost in seconds.

 

[Markku]

Awareness causes, while important, are not in the scope of this fund, unless all donors of the campaign and Danny Boy's family unanimously agree to such a change.

That's because the campaign was (and still is - it's ongoing) advertised all along as raising funds specifically for tinnitus research.

 

[TheDanishGirl]

I would say 'awareness' is key and if people like Danny had more compassionate help when they seek it then some lives may be saved. Not sure how you do that though? Maybe someone else will?

It would seem suitable legacy for him, Danny Boy's Tinnitus Awareness Fund. Maybe a simple "Tinnitus Awareness App" could be developed for Doctors and ENTs etc.

As a donation to research (whilst commendable) it will be a drop in the ocean and lost in seconds.

It has been promised that the money will go to research, so of course that is where the money should go.

 

[Deamon22]

Maybe University of Minnesota or Michigan? That seems like the closest thing to a treatment right now. Betting on a drug seems to be too far away.

 

[David]

To add my two penneth - one way may be to invite international applications for the funding with some sort of call e.g. 'Projects to silence tinnitus,' (sure there can be a better title) these applcations can come into the BTA. We can then put all the lay summaries on here and details of the budget, then people can vote for their favourite project and that one get funded?

People here could raise awareness of the fund with their favourite research centres/causes.

Disavatange to this - projects will be relatively small scale
Advantage - we know what the money will be spent on and (should) have an outcome (e.g. a paper) - may well get more for our money then a one off donation to an insitution

 

[Ed209]

Ok, I'm gonna give my input. A lot of people are already aware of Professor Tzounopoulos's work on here and I remember looking into SciFluor's SF0034 compound, quite extensively, after Autifony's AUT00063 failed in phase 2. This was a couple of years back now but I have kept track with certain developments but he seems to have gone into the shadows somewhat.

However, I'm aware he is working on new novel compounds which sounds promising, and this would also be befitting of what Danny supported; namely, voltage-gated potassium ion channels. I believe professor Tzounopoulos is looking into various KCNQ channels (Danny researched KV channels which is what Trobalt had an effect on). Even if what we have is a drop in the ocean, we are still objectively contributing and surely that has to be better than just wishful thinking? And of course, we still have time to alter what will be the final amount .

Maybe once we know who the beneficiary will be more people will jump onboard?

 

[glynis]

I would love £1000 to go in a bank account for his little girl... if possible.

love glynis

 

[Ed209]

Advantage - we know what the money will be spent on and (should) have an outcome (e.g. a paper) - may well get more for our money then a one off donation to an insitution

I very much like this route also because we attain more bang for our buck.

 

[glynis]

@Markku @David @Steve

Could this be the start of joint fundraising for research for Tinnitus Talk/Hub and BTA and whoever wants to join?

love glynis

 

[David]

I would love £1000 to go in a bank account for his little girl... if possible.

love glynis

Lovely idea but unfortunately wouldn't be able to within the confines of how this money has been raised.

Nothing stopping a seperate fundraiser being set up for this.

 

[kelpiemsp]

I think it's very important to understand a couple of things first.

1. Many researchers are limited in their ability to accept money. Often to accept money, a researcher usually has to provide a "match" this is usually sponsored by the institution to pay for things such as overhead. Also the institution has to have a contract etc. This is to protect the research and researcher from undue donor influence
2. This isn't a huge amount to fund a paper. The smallest grant that funded a paper in my research area was around 100k while in graduate school.
3. Ultimately donating to an organization that can accept donations is the easiest.
4. Alternatively, we could look at a scholarship for a student studying tinnitus. This would exempt the institution and the faculty. While research that pays a faculty professor is extremely expensive, many papers are actually researched and written by the graduate student and the faculty just reads it and puts their name as first author so it gets published. A 5,000 dollar scholarship to a student studying tinnitus would get quite a few applications worldwide and if we went this route, we could realistically request a paper. If this were the case, we could lower it to say 2,000 and try to make it an annual thing for a few years. Thoughts on that???

 

[glynis]

Alternatively, we could look at a scholarship for a student studying tinnitus. This would exempt the institution and the faculty. While research that pays a faculty professor is extremely expensive, many papers are actually researched and written by the graduate student and the faculty just reads it and puts their name as first author so it gets published. A 5,000 dollar scholarship to a student studying tinnitus would get quite a few applications worldwide and if we went this route, we could realistically request a paper. If this were the case, we could lower it to say 2,000 and try to make it an annual thing for a few y

I love this idea @kelpiemsp

love glynis

 

[David]

I believe professor Tzounopoulos is looking into various KCNQ channels (Danny researched KV channels which is what Trobalt had an effect on). Even if what we have is a drop in the ocean, we are still objectively contributing and surely that has to be better than just wishful thinking? And of course, we still have time to alter what will be the final amount .

A few ways this could happen;
1. Have an open research call and invite Prof T to put in an application
2. Ask Prof T what he's currently raising funds for relevant to this and commit the amount raised to that once the rest of the funds are secured. We would then potentially have some notification of progress. Although no guarantee anything would happen, as it would be reliant on Prof T being able to raise other funding. As you say @Ed209 more may come from here once people realise this is what will will go towards. Whether it would be enough to make a difference to the amounts quoted elsewhere is hard to say.
3. Make an open donation to Prof T's university

I'd be happiest with #1 but #2 is workable also. #3 is hardest for me, as there's no guarantee where this goes. Universities tend to have huge overheads too that can swallow up this amount without anything to show for it.

Any other ideas? Is Prof T definitely the direction to take?

 

[Ed209]

I think it's very important to understand a couple of things first.

1. Many researchers are limited in their ability to accept money. Often to accept money, a researcher usually has to provide a "match" this is usually sponsored by the institution to pay for things such as overhead. Also the institution has to have a contract etc. This is to protect the research and researcher from undue donor influence
2. This isn't a huge amount to fund a paper. The smallest grant that funded a paper in my research area was around 100k while in graduate school.
3. Ultimately donating to an organization that can accept donations is the easiest.
4. Alternatively, we could look at a scholarship for a student studying tinnitus. This would exempt the institution and the faculty. While research that pays a faculty professor is extremely expensive, many papers are actually researched and written by the graduate student and the faculty just reads it and puts their name as first author so it gets published. A 5,000 dollar scholarship to a student studying tinnitus would get quite a few applications worldwide and if we went this route, we could realistically request a paper. If this were the case, we could lower it to say 2,000 and try to make it an annual thing for a few years. Thoughts on that???

Thanks for your input, Kelpie. As a researcher yourself, this is very informative. It's most certainly food for thought.

 

[Kelvin]

It has been promised that the money will go to research, so of course that is where the money should go.

Oh... sorry I hadn't realised.

Research it is!

The drop goes into the ocean... but a drop at least X

 

[David]

A 5,000 dollar scholarship to a student studying tinnitus would get quite a few applications worldwide and if we went this route, we could realistically request a paper. If this were the case, we could lower it to say 2,000 and try to make it an annual thing for a few years. Thoughts on that???

Also a good idea - whilst the research is likely to be of limited value, you do potentially encourage new scientists into the field.

 

[kelpiemsp]

Also a good idea - whilst the research is likely to be of limited value, you do potentially encourage new scientists into the field.

You would be surprised at how many papers are written with research started by graduate students... in fact that is how signal timing got its start. A graduate student playing around with chronic pain data noticed it influenced mechanisms that could relate to tinnitus.

 

[Ed209]

Any other ideas? Is Prof T definitely the direction to take?

There's Brian Allman of Shulich Medicine (https://www.schulich.uwo.ca/anatomy/people/bios/faculty/allman_brian.html). Although admittedly, I'm not directly familiar with his work, but I have had discussions with an organisation who do fund his work directly. It would need investigating to see if his work is a good fit or not.

There are many avenues we could go down which is why this thread is important. We need to converge on something that we can all see a benefit in.

Hopefully we can raise more money once we know who the chosen beneficiary will be. I think we are all aware that 4K isn't going to get us very far, but it certainly gets us further than doing nothing.

 

[Ed209]

Any more ideas?

 

[david c]

To add my two penneth - one way may be to invite international applications for the funding with some sort of call e.g. 'Projects to silence tinnitus,' (sure there can be a better title) these applcations can come into the BTA. We can then put all the lay summaries on here and details of the budget, then people can vote for their favourite project and that one get funded?

People here could raise awareness of the fund with their favourite research centres/causes.

Disavatange to this - projects will be relatively small scale
Advantage - we know what the money will be spent on and (should) have an outcome (e.g. a paper) - may well get more for our money then a one off donation to an insitution

The headline for the fundraising for this worthy cause is "let's cure tinnitus and hyperacusis". Yet already the wording you are suggesting seems to have subtly changed. "Projects to silence tinnitus". Could this be an attempt to ensure that the usual "management strategies" receive the money - after all they don't claim to "cure" tinnitus but many do "claim" to "silence it".

Here's a suggestion - why don't you stick to the wording which you are using to raise money: "Projects to cure tinnitus"?

 

[Ed209]

Here's a suggestion - why don't you stick to the wording which you are using to raise money: "Projects to cure tinnitus"?

David, the title was written by me and the only reason it says cure and not 'let's find a treatment' is because GoFundMe only allow so many characters. I used them all up and had to reword it many times until I ended up choosing that. I figured it's punchy and gets straight to the point whilst conveying the right sort of message.

Can you not bring your arguments over here please; this thread is entirely about looking at ways to fund research with our limited budget.

 

[david c]

David, the title was written by me and the only reason it says cure and not 'let's find a treatment' is because GoFundMe only allow so many characters. I used them all up and had to reword it many times until I ended up choosing that. I figured it's punchy and gets straight to the point whilst conveying the right sort of message.

Can you not bring your arguments over here please; this thread is entirely about looking at ways to fund research with our limited budget.

It's really just about being honest to the people who are giving money - if they see something saying "let's cure tinnitus" that's different from saying "let's silence tinnitus". Also, it's very important to have the wishes of Daniel's family taken into account - what would they regard as the best tribute?

 

[Ed209]

It's really just about being honest to the people who are giving money - if they see something saying "let's cure tinnitus" that's different from saying "let's silence tinnitus". Also, it's very important to have the wishes of Daniel's family taken into account - what would they regard as the best tribute?

It's all semantics and is the least of our worries to be honest. Can we now keep it on topic please as I don't want your obsession with David Stockdale taking over.

 

[Tinnitus Talk]

@david c, we've been in contact with Daniel's family right from the start and have acquired their blessing for the fundraiser.

Furthermore, the research project that the donors help select will be shared with the family, to make sure it's something they're happy with.

General notice for everyone
Off-topic posts will be removed in an effort to keep the thread manageable and focused on discussing potential beneficiaries of Daniel's fund.

 

[david c]

@david c, we've been in contact with Daniel's family right from the start and have acquired their blessing for the fundraiser.

Furthermore, the research project that the donors help select will be shared with the family, to make sure it's something they're happy with.

General notice for everyone
Off-topic posts will be removed in an effort to keep the thread manageable and focused on discussing potential beneficiaries of Daniel's fund.

That's great - I don't think I had suggested in my post that you hadn't been, all I was asking is if they had given any indication of what sort of research they wanted to see? (Obviously I appreciate it's an incredibly difficult time for them).

Hope that a good project is chosen which will bring that cure a bit closer.

 

[TuxedoCat]

I thought I read that BTA only funds research within the UK. Can that be confirmed? Would BTA make an exception for Danny's fund?

 

[David]

I thought I read that BTA only funds research within the UK. Can that be confirmed? Would BTA make an exception for Danny's fund?

We would, we might change this in the future anyway. The reason we do this is we think it is important there's an active research community in the UK.

 

[Ed209]

A side note. I'm thinking of sending letters to 2 of the 100 US Senators in the USA to add a one dollar donation to the Federal Tax Form donation list. There's millions with tinnitus in the USA.

Greg, if you can pull that one off it would be awesome.