[Danny Boy Memorial Fund] In Loving Memory of Danny Boy

[jimH]

If all the viewers to this thread had donated just a £1 each we'd have likely reached our target by now.

Ed has made a very important point. That many small donations can add up to be quite a sum.
Therefore, if you have very little money, don't think that your donation would not count for much. If you're embarrassed to give a small donation, you can also do it "Anonymously."

In my opinion, for those who have little, even giving 5 pounds or 5.00 US dollars, is a generous donation.

 

[Starthrower]

Unfortunately, this is how the tinnitus community works against itself. We all want more research; we want treatments; we want a cure; we want to see some form of action; we want to lessen the suffering of others, and we also want more awareness. But, only the most tiny, minuscule percentage, take some form of action to help ensure these things can happen.

Matteo de Nora donated almost 20 million dollars to the tinnitus community. And most do not know his name.
This aspect needs to be changed. Some people prefer to be quiet and unnoticed but the tinnitus community has an obligation to make sure Matteo's contribution is not forgotten. I found such interest in his story and how it created the TRI. Why are we still struggling?

Why do big donors vanish? It isn't because they are not worshipped. They didn't want that. They simply wanted things to change but in my personal experience the egotism and good old boys club mentality took over from the particular organization itself. And the donor was simply forgotten and vanished from the tinnitus scene.

I still wonder about Matteo. I don't want him to be forgotten.

This leaves each of us to make sure @Ed209's fund raiser is Tinnitus Strong by members here. But as Ed wrote very few with the financial means - donate. The reasons vary but it makes me sad.

 

[glynis]

@Ed209, @Markku, @Steve

When I was fundraising for the BTA I paid the money in through a bank and I wonder if they could arrange donations to be paid in Daniel's fund that way as not everyone has a Visa or PayPal account etc.

Just an idea brainstorming.

love glynis x

 

[Starthrower]

not everyone has a Visa or PayPal account etc.

Yes. This was an issue for us regarding PayPal as a "guest". Not sure if GoFundMe has other options? But, yesterday it was so important after talking it over with my husband, we decided to use the site's method.

 

[GregCA]

When I was fundraising for the BTA I paid the money in through a bank and I wonder if they could arrange donations to be paid in Daniel's fund that way as not everyone has a Visa or PayPal account etc.

Pretty much any credit/debit card (Visa, MasterCard, Amex, etc...) works with PayPal Guest Checkout (without creating a PayPal account) I think.

 

[Markku]

Pretty much any credit/debit card (Visa, MasterCard, Amex, etc...) works with PayPal Guest Checkout (without creating a PayPal account) I think.

Not with GoFundMe (at least), unfortunately.

We confirmed this with GoFundMe directly after some people had reported they were forced to sign up to a PayPal account if they wanted to donate.

US and UK-based people can use the PayPal Guest Checkout with credit / debit cards, but in (most) other EU countries, GoFundMe's PayPal checkout process forces to create a PayPal account or to sign into one - Guest Checkout isn't available.

GoFundMe said they're trying to work around this in the future, to allow everyone the option of guest checkout with card payments.

 

[glynis]

I found another GoFundMe on my Facebook as sadly a work colleague's son had passed away 2-3 days ago at a young age 32 due to cancer and had battled with it for a few years and married last year and died on holiday in Spain.

Daniel's GoFundMe was the first time I knew about GoFundMe and I think it's a great way to donate and can add a lovely message too...

love glynis

 

[Richard zurowski]

@Markku, I've got several friends and family who want to donate but unfortunately cannot due to this problem. So frustrating Markku.

 

[glynis]

*+*Hello Tinnitus Talk Members*+*,

Let's see if we can push Daniel's Memorial Fund higher. Just think how you would feel if it was you we were doing this for in your memory.

Donate £1! Let's see if every member can donate one pound and push this even further. Your £1 will be put to good use.

What could you get for £1? An ice cream, chocolate bar, can of pop etc.

Let's all give £1 from our hands to shake the hand of a much loved Tinnitus Talk member whom sadly lost his fight with tinnitus and hyperacusis.

It only takes a minute or two to donate and the rewarding feeling it gives you is well worth it.

We can achieve anything together! We do care about every member.

love glynis

 

[Samantha R]

I couldn't agree more with everything said above by @Ed209, @TheDanishGirl and @Starthrower.

The tinnitus community lacks the motivation / inclination to financially contribute to their own cause. I do not understand this as there are so many of us. I have certainly made a donation, and will continue to do so regularly.

However, I do want to share my observations and thoughts on why the lack of support from those suffering.

I personally think it's great that we are dedicating the money raised in Danny's memory to research.

I don't want to see money spent on "CBT for Sleep" studies (for example), I want to see this money put towards something like the research on potassium channel openers and cochlear hair cell regeneration

We want a cure, and maybe if people know their money is going to research that will actually reduce or stop their noise rather than just helping them cope, then they may be more willing to donate.

@Markku, @Ed209 - can the BTA be more specific on what research projects they are involved in currently and where these funds might be used?

I think that might help to generate more financial support from the tinnitus community. Even if we had a regular communication from them (and maybe even the ATA) that we could share with those on Tinnitus Talk, I think it would help to keep everyone informed and maybe even encourage more donations.

Thanks to everyone who has donated so far, but we are only 20% of the way towards our goal. Let's do it for Danny!

Sam.

 

[Starthrower]

I've got several friends and family who want to donate but unfortunately cannot due to this problem. So frustrating Markku.

That is sad. I understand their frustration. We were able to do the PayPal guest donation.

@Richard zurowski, maybe you could have your network of friends who want to help send the money to you and then you can donate on GoFundMe in their names? That is very generous and kind of them.

I almost did this myself as I was going to contact Markku about it. But, I was able to do the PayPal guest donation here in the US.

What could you get for £1? An ice cream, chocolate bar, can of pop etc.

Yes @glynis. When we donate it means giving up something like dinner out for a month. No big deal and well worth the effort to help Danny's fund and the BTA's effort to help.

 

[Markku]

@Markku, @Ed209 - can the BTA be more specific on what research projects they are involved in currently and where these funds might be used?

I can say that there has already been informal dialogue about this - such as reviewing the status of the fundraiser in a few months, and then involving the donors in selecting which research topic gets funded.

However, I must stress nothing has been set in stone and I can imagine there are many questions to tackle, such as what is the most meaningful way to spend the raised funds. Even though many tinnitus sufferers' first instinct may be to support certain popular clinical research programs, maybe funding a smaller project that seriously depends on small research grants can potentially yield better results than trying to give a few grand to some large-scale research project which in reality needs millions of dollars in funding and these funds would literally be a drop in the bucket.

In any case, of course it would be ideal if potential donors either knew beforehand what research project(s) the funds are given to, or if they knew that they had a saying in the matter at some point during/after the fundraiser. Both options sound quite good to me.

But we have to respect there's a protocol to allocating such funds, scientific committees, organizational research strategies, etc.

All that said, personally, I don't have too much faith in the overall tinnitus community to be open-handed with donations, no matter what the cause or research project was. It's unfortunately obvious from the small number of donors taking part in Daniel's fund thus far that it's absurdly difficult to galvanize the community.

There are a few shining stars in the community who make the exception, who have supported tinnitus causes, and those deserve a lot of kudos. I just wish the majority didn't think someone else will carry the weight for them.

Daniel wouldn't have thought one second making a donation to a fundraiser like we're now having in his memory. Daniel was one of those rare shining stars.

I will ask BTA to provide a comment, possibly @David will even chip in himself.

For those interested, you can find BTA's 2014-2020 research strategy via this link.

BTA is also creating a roadmap to a tinnitus cure, which you can find attached to my post.

Thank you to everyone who has ever contributed to our work here on Tinnitus Talk, and thank you to everyone who is now taking part in Daniel's memorial fund.

 

[Samantha R]

@Markku
Thanks for the detailed reply, I greatly appreciate it.

Absolutely everything you say makes perfect sense, as always.

Much to consider, that is certainly true, and I like the idea of the smaller research projects (which we are most likely unaware of).

Thanks for the links as well, I'll check them out now.

 

[lymebite]

A nice research project to fund with Danny Boy's fundraiser would be to continue the work to find a safer version of Trobalt / retigabine, one that silences tinnitus without the side effects. If this new version of Trobalt existed, Danny Boy might still be among us.

As I recall, this researcher, Dr. Thanos Tzounopoulos, is one of the people who has been working on the improved Trobalt, I think there may be others too. From the link:

"Based on our recent findings on the molecular mechanisms underlying the induction of tinnitus and in collaboration with the medicinal chemist Dr. Peter Wipf of the University of Pittsburgh, we are developing and testing novel specific Kv7.2/3 (KCNQ2/3) activators for preventing the triggering of tinnitus."

http://phrc.pitt.edu/people/thanos-tzounopoulos

 

[Markku]

A nice research project to fund with Danny Boy's fundraising would be to continue the work to find a safer version of Trobalt, one that silences tinnitus without the side effects. If this new version existed, Danny Boy might still be among us.

As I recall this researcher, Thanos Tzounopoulos, is one of the people who has been working on the improved Trobalt, I think there may be others too. From the link:

"Based on our recent findings on the molecular mechanisms underlying the induction of tinnitus and in collaboration with the medicinal chemist Dr. Peter Wipf of the University of Pittsburgh, we are developing and testing novel specific Kv7.2/3 (KCNQ2/3) activators for preventing the triggering of tinnitus."

http://phrc.pitt.edu/people/thanos-tzounopoulos

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.

I'm wildly speculating here. I have to admit I'm not even sure if BTA guidelines could hypothetically allow to fund US-based researchers. I believe most BTA funded research is UK/EU based - which doesn't come as a surprise.

Interesting idea nonetheless. You're always full of interesting ideas/thoughts @lymebite!

 

[Greg Sacramento]

Besides the stem cell companies I think that this company could greatly help us. They have support from the best neuroscientists to Wall Street.

They mention tinnitus and their research in a prior link that I posted.

Please help me in writing letters to the CEO and Board of Directors for a trial with full emphasis on tinnitus.

https://www.sagerx.com/therapeutic-focus/

 

[DebInAustralia]

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.

I'm wildly speculating here. I have to admit I'm not even sure if BTA guidelines could hypothetically allow to fund US-based researchers. I believe most BTA funded research is UK/EU based - which doesn't come as a surprise.

Interesting idea nonetheless. You're always full of interesting ideas/thoughts @lymebite!

No. I haven't heard from the Prof, but I am about to flick off an email to request an update.

I'll report here when I get a reply.

 

[DebInAustralia]

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.

I'm wildly speculating here. I have to admit I'm not even sure if BTA guidelines could hypothetically allow to fund US-based researchers. I believe most BTA funded research is UK/EU based - which doesn't come as a surprise.

Interesting idea nonetheless. You're always full of interesting ideas/thoughts @lymebite!

Thanos Tzounopoulos has replied today.

Here is his response.

"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."​

I will ask him to comment further on the new compounds that he is currently working on, and report anything relevant here.

 

[David]

First of all let me pass on my condolences to all of Daniel's friends and on here. Reading some of the posts in this strand it is clear that Daniel was held in high regard as a valued, compassionate and considerate member of the Tinnitus Talk community.

In terms of the question addressed to me above;

can the BTA be more specific on what research projects they are involved in currently and where these funds might be used?

The current and previous research the BTA has funded is listed here; https://www.tinnitus.org.uk/Pages/Category/bta-supported-research?Take=12

The roadmap @Markku linked to is the direction we're looking to take future research funding in and I'll post information on this in more detail, in a different strand, so not to take the emphasis away from the focus of this one.

As to what happens to the money raised in Daniel's name. This will be kept in a restricted fund, only to be used for research, 100% of the funding the BTA receives from this will be spent on research.

As to what research to fund, I think it's probably best to revisit towards the end of the year and see how much has been raised as this will have a significant impact on what can be achieved. I'd like to agree on what research the funding gets spent on in the most democratic way possible with the Tinnitus Talk community. Maybe we could; gain consensus on what to advertise within a research call, advertise a research call Worldwide, then vote on which project(s) to support. Not sure if this is possible through Tinnitus Talk, and I've not discussed it with @Markku or @Steve yet. I'm open to other suggestions on how to best go about it. Again, maybe a separate strand to discuss would make sense.

Please be assured I want the Tinnitus Talk community to have real and genuine influence over what gets funded to ensure it is a fitting tribute to Daniel's memory.

 

[Stakovic]

It's better to give this money to Daniel's family than to researchers.

 

[robHing]

It's better to give this money to Daniel's family than to researchers.

You don't fully know Danny Boy's suffering.

Please check @Christian78's post related to his memory of Danny.

 

[Greg Sacramento]

It's better to give this money to Daniel's family than to researchers.

I could not agree more since he has a daughter and more money could probably be raised for this purpose. There is plenty of research money that could be available and researchers know that. General medical researchers know a lot about physical biology except the brain where tinnitus has involvement.

Focus must be made on the medical community to give proper time with a team approach to each patient in finding what medical problems that they have per association with one's tinnitus.

There's plenty of money in most university endowment funds and most public healthcare companies also have ways to raise cash thru public offerings. If they believed that a certain treatment has promise they would be jumping on it.

Harvard University that has financial association with Massachusetts Eye and Ear has billions and billions of dollars available. Our focus should be on getting universities and corporates to invest in our space. There are also needs for tinnitus associations to support the BTA and ATA.


http://www.hmc.harvard.edu/docs/Final_Annual_Report_2016.pdf
https://www.harvard.edu/about-harvard/harvard-glance/endowment

 

[Starthrower]

As to what research to fund, I think it's probably best to revisit towards the end of the year and see how much has been raised as this will have a significant impact on what can be achieved. I'd like to agree on what research the funding gets spent on in the most democratic way possible with the Tinnitus Talk community. Maybe we could; gain consensus on what to advertise within a research call, advertise a research call Worldwide, then vote on which project(s) to support. Not sure if this is possible through Tinnitus Talk, and I've not discussed it with @Markku or @Steve yet. I'm open to other suggestions on how to best go about it. Again, maybe a separate strand to discuss would make sense.

Please be assured I want the Tinnitus Talk community to have real and genuine influence over what gets funded to ensure it is a fitting tribute to Daniel's memory.

Thank you so much @David. It is assuring to note that the BTA is going to be so careful in selecting how Danny's fund will be chosen. It is great to see you involved here!!

It's better to give this money to Daniel's family than to researchers.

Danny's fund was created for the tinnitus community by @Ed209. This means Danny will always be a part of the BTA in some way. His memory will live on through research efforts. From what I have read this would be something he would agree with.

Anyone is free to start a different fund drive for his daughter. I am sure in years to come she will find out just what her father did to help so many tinnitus people on Tinnitus Talk and through the BTA's efforts.

 

[Greg Sacramento]

All that said, personally, I don't have too much faith in the overall tinnitus community to be open-handed with donations, no matter what the cause or research project was. It's unfortunately obvious from the small number of donors taking part in Daniel's fund thus far that it's absurdly difficult to galvanize the community.

Ed and Glynis have placed their heart and soul into this project and caring people don't come any better than these two members of Tinnitus Talk and Markku and all of us are appreciative.

We had fundraisers over the years for the parting of an employee or family member within a hospital system of thousands of medical employees. There was always two funds, one for employee's family and another for a medical association.

The employee family fund would get contributions often exceeding 25 -50 thousand dollars.

The medical association fund often less than 250 dollars and some of the thought behind is let the big rich contribute or I'm not paying for administration costs. Medical employees are more generous to social agencies for the homeless, families in need, aging community members, children with special needs - etc.

The BTA and ATA are good organizations.

 

[DebInAustralia]

Thanos Tzounopoulos has replied today.

Here is his response.

"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."​

I will ask him to comment further on the new compounds that he is currently working on, and report anything relevant here.

Further response from Prof. Tzounopoulos:

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.​

 

[valeri]

Thank you so much @David. It is assuring to note that the BTA is going to be so careful in selecting how Danny's fund will be chosen. It is great to see you involved here!!


Danny's fund was created for the tinnitus community by @Ed209. This means Danny will always be a part of the BTA in some way. His memory will live on through research efforts. From what I have read this would be something he would agree with.

Anyone is free to start a different fund drive for his daughter. I am sure in years to come she will find out just what her father did to help so many tinnitus people on Tinnitus Talk and through the BTA's efforts.

Danny will be part of BTA for as long as James Ivor Jones was!

Or Larry OT was for ATA!

That is until... they get the money!

 

[Ed209]

@Markku, I've got several friends and family who want to donate but unfortunately cannot due to this problem. So frustrating Markku.

I'm prepared to make the donation for your family and friends, if you want. I can PM you my bank details and you can send the money there. Once I receive it I'll transfer it to Danny's Fund. I could name the donors in the comments if that's something they wanted.

 

[Jazzer]

Guys, please be aware when promoting fundraising appeals that the desire to donate may be curtailed by practicalities.

Three months ago I lost my entire career.
I earn nothing....

I currently have tenants living in my flat who have ruined it, have paid no rent for over a year, I am currently owed over £15,000 in unpaid rent.

If the courts ever give me repossession of my own property I will need to find some money from somewhere to redecorate, recarpet etc....and try to re-let.

My wife and I spend most of our time, energy, and funds promoting worldwide charity appeals for the Royal Marsden Cancer Hospitals in Sutton and Tooting.

Cancer has taken so much from our family, striking our children as well as our adults.
We simply can not do more than we do.

We really do not know other people's means.

Having said all this, of course I wish this appeal well.
If my circumstances ever recover, I will be pleased to do more.

I really didn't want to write this post, but feel for other people who may be similarly 'strapped.'

 

[Ed209]

Guys, please be aware when promoting fundraising appeals that the desire to donate may be curtailed by practicalities.

Three months ago I lost my entire career.
I earn nothing....

I currently have tenants living in my flat who have ruined it, have paid no rent for over a year, I am currently owed over £15,000 in unpaid rent.

If the courts ever give me repossession of my own property I will need to find some money from somewhere to redecorate, recarpet etc....and try to re-let.

My wife and I spend most of our time, energy, and funds promoting worldwide charity appeals for the Royal Marsden Cancer Hospitals in Sutton and Tooting.

Cancer has taken so much from our family, striking our children as well as our adults.
We simply can not do more than we do.

We really do not know other people's means.

Having said all this, of course I wish this appeal well.
If my circumstances ever recover, I will be pleased to do more.

I really didn't want to write this post, but feel for other people who may be similarly 'strapped.'

One of my closest friends had exactly the same problem with unpaid rent, Dave, and I find people who do this deplorable. The complete lack of power to kick these people out is, quite frankly, shocking. You have my full sympathy. In fact, the head of department at my wife's school is also going through this as we speak.

I fully understand that not everyone has the means to support this campaign, but what I would say is if you honestly can't donate, please share it amongst friends and family, and ask those to share it too. A share is often worth as much as a donation and doesn't cost anything. If any of you can spare £1 ($1) then that would also be awesome, but if you really can't then it's absolutely fine and you should feel no guilt about it. Our financial position can sometimes be out of our hands.

However, we have strength in numbers here, so small donations can soon add up and become a significant figure. All I would say is before any of you buy a cheeseburger at McDonald's, a chocolate bar, or a bag of crisps (potato chips), etc: ask yourself if just this once you could donate that £1 ($1) here instead. Just once. That one contribution would directly help the cause that brings us all here. The very cause that unites us on this forum. So, what's more important, that extra cheeseburger, or taking a stand against tinnitus?

I'll repeat that if £1 ($1) is unaffordable then please share it far and wide instead.

I'm also glad to hear that you support cancer as well, Dave. It's taken far too many from my family as well and it's a very cruel condition. I've been donating to various cancer charities over the years, so I applaud your advocacy.

 

[Starthrower]

We had fundraisers over the years for the parting of an employee or family member within a hospital system of thousands of medical employees. There was always two funds, one for employee's family and another for a medical association.

This is a great idea @Greg Sacramento. I do agree that people donate for those left behind after a loss much more easily than research ideas. It gives them that feeling of helping someone in need.

Danny will be part of BTA for as long as James Ivor Jones was!

Or Larry OT was for ATA!

That is until... they get the money!

@valeri I wish I could say you were wrong. But you are not. I have been through this years ago raising funds for tinnitus sufferers to have access to medical help. While it worked well for a few years... things changed. I had expected more medical professionals to donate time and other means for help. That did not happen. The organization did a great job but then a changing of the guard so to speak changed the mission of the organization and it was too much work.

This is what we need to change somehow. We cannot let the organizations forget why for: Danny, Larry OT and my friend Dave and others.

I really didn't want to write this post, but feel for other people who may be similarly 'strapped.'

I know that is when we lean on those who can donate!! I always noticed the people who donated were always those with the least financial means. For example, a friend of mine who was on a tight budget after the financial crisis years back sent in a nice large check because he knew me and my mission. That brought tears to my eyes and I felt bad that he and his wife gave so much... when my rich friends were much more tight and less likely to donate.

I will never understand this.