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

If I were to decide what tinnitus research should be supported, I would continue to be more interested in diagnostics than therapy.

There should be efforts for high-resolution MRI diagnostics that allow statements to be made about the integrity of hair cells.

Answering the question of whether there is any damage there probably would be an essential step in tinnus research.

 

Can certain researchers send in requests for the donation money with a detailed outline of how it will help their research? There may be some smaller type of institutions needing this money even though it isn't 10k. Yet.

Then we at TT can review the requests?

 

@Greg Sacramento and @Ed209 Years ago I wrote my state senator Diane Feinstein when there was a bill in congress for funding for hearing related issues. I wrote her a personal letter with my story about tinnitus and the loss of my friend and how it affects so many tinnitus sufferers including our military veterans.

She wrote me back a person letter. I was so very impressed. She said she was going to vote in favor of the bill and thanked me for helping her understand the importance of the matter.

It works.

 

David and Kelpie have already mentioned something along those lines.

 

That's a great idea... some of the senators have already been exposed to the Tinnitus cause before (see https://image.slidesharecdn.com/d54...nitus-today-aug-2009-19-638.jpg?cb=1459451715 ) - and I wonder which one(s) suffer from it. A quick google search didn't turn up any obvious answer, but statistically speaking, there should be some of them affected by it directly, and even more affected by it indirectly, especially given their links to veterans.

 

Since I said I would donate to research anytime I hope I can add to this thread.

What about setting up an amount as a reward to researcher who finds a cure?

Would that get researchers to hurry up, sort of initiative?

Just a thought!

 

It really wouldn't help bring about a cure faster.

Researchers and anyone in the medical field know that whoever comes up with a cure will become a multi millionaire, if not a billionaire.

 

I agree with advocate, Val. The other factor to this is that we don’t have any way of offering a reward.

 

I originally posted this in the wrong thread.

I'm a big fan of Prof. Tzounopoulos' research.

I know @DebInAustralia has recently been in touch with him, and things are still moving, albeit at a slow pace. I wonder if funds are an issue, but he doesn't seem to give too much away.

It's going to take a lot of $$$$ to help Prof Tzounopoulos though, and what we have is a drop in the ocean.

I wish the tinnitus community would do more.... but we've had that discussion numerous times.

At any rate, I agree with @Ed209. People are more likely to donate to something if there is an actual beneficiary. So if we said that we were supporting Prof Tzounopoulos and explained the research, then I think that will encourage donations as we actually know where the money is being spent.

At the moment, saying it's just being spent on 'research' may be too vague for some people.

So hopefully we can make a decision and market the fund further from there to encourage more donations.

Good work everyone, I noticed that it was shared on the BTA page and Tinnitus Hub and there have been a few more donations.

I've been commenting on posts there encouraging people to donate, but we'll see how it goes.

 

I noticed quite frequently in the comments people saying things like ‘we need a cure’ and then don’t donate. It’s hard to connect the dots without being patronising or coming across as rude. If 1 in 10 have tinnitus and 1 in 10 of those have it really bad then there are literally millions of us out there. If somehow an ultimate fund could be setup for all to see we could raise a fortune, but this really is wishful thinking and is never going to happen. I wish it would though. I’d love to see everyone who takes an interest in the research side of tinnitus, and all others who suffer with it to get involved with small donations.

 

Any further ideas?

At the weekend I think we should create a poll so we can vote on what we believe is the best course of action. Once the people have spoken I can update the campaign to reflect where the money is going.

In the meantime, does anybody else have anything they can add?

 

I believe that most of the funds should go to American researchers from the United States.

Why, you ask?

Because only in the US there is a real platform for research today, moreover, there are already relatively successful studies of tinnitus and scientists who have been working on understanding this problem for many years, such as Thanos Tzounopoulos, Josef Rauschecker, Susan Shore, and others.

That is, they have already formed their own base, have their own team, the research is at some advanced stage, and we can help them financially to move them even closer to clinical implementation.

It seems unreasonable to me, given the limited and modest nature of this amount of money, to allocate it to "completely newcomers" in the study of tinnitus.

Firstly, this money is not enough to start serious research.

Secondly, as I said, this is irrational, at a time when there are already large research projects in an advanced stage.

Of course, if we were donating millions, we could support the early-stage researchers. But we are very limited in resources, so we have to use them extremely rationally.

In my opinion, already all possible directions and treatment modalities are in development (Thanos Tzounopoulos, Josef Rauschecker, Susan Shore, etc.).

What is necessary is to solve the problem of getting this money exactly to those people to whom it was intended, and not have it get lost "on the road" in overhead costs.

Thank you, all the best.

 

The BTA has been so gracious on the fundraising for Danny's cause created by Ed. It is my opinion the BTA and Tinnitus Hub should keep the funds in the UK research arena.

 

I'd like to suggest that Josef Rauschecker be considered. As of the last Tinnitus Conference, he is investigating the use of lidocaine for suppressing tinnitus. Supposedly its effective but not practical because its administered IV and is of short duration. Even if it can't be developed into a marketable format, having something that works would be useful when it comes to developing and validating an objective measure of tinnitus. I gather Danny was interested in potassium channels. Lidocaine works on sodium channels.

I also wonder if the money could be used to purchase a piece of laboratory equipment that an investigator needs for the study of tinnitus, a new centrifuge, lab balance or something more specialized. A small plaque could be applied - Donated in Memory of Danny.

 

Why not expand on the current topic?
What about another suicide? It’s not any less tragic or significant than Danny’s!

Can you combine it with the idea you had before all this happened? I guess it was some sort of fundraiser too!

Some plan is needed Ed, not doing bits and pieces here and there! One person can’t do much unless you’re famous, different story then! Sex scandal took off only because of Hollywood and celebrities! More serious and horrible crimes happen every day to ordinary people but we don’t hear about it.

Can we have some guidelines and get people involved!

 

That’s what we’re doing isn’t it?

I don’t know how to answer this as I’m not entirely sure what you’re trying to say.

We have a plan? This has nothing to do with famous people.

I never mentioned the Hollywood scandal, I was referring to these things in general. For example, in the U.K. there are various underage abuse victims coming forward after decades of silence. One case is of nationwide abuse of young boys by football coaches that goes back to the 70’s and 80’s. There’s institutional abuse that dates back decades such as care homes and also the notorious case of priests abusing children. There’s also the Bill Cosby and Kevin Spacey cases which involve normal people, not celebrities; this shows incredible courage by the people who exposed them and proves the power an individual can have. The Hollywood scandal is the tip of the iceberg. Anyway I digress, but I think this shows people do usually act if they believe something will happen. In my opinion, if enough people honestly believed in what we’re trying to do, more would join because things like this can snowball quite easily. It takes belief and conviction to tip the majority.

I’d love more people to get involved but I’m not sure what more we can do to make that happen?

I’d love to see you get involved, Val. It would be really good to see you onboard.

 

Before I make a live Poll, are there any changes or additions you would like to see to this:

• Michigan Medicine, University of Michigan (Dr Susan Shore) https://medicine.umich.edu/dept/khri/susan-e-shore-phd
• Sonic Lab, University of Minnesota http://soniclab.umn.edu/research/neural-beamforming-tinnitus
• Invite international applicants (which the BTA can handle) and select a project based on merit.
• PHRC, University of Pittsburgh (Prof Thanos Tzounopoulos) http://phrc.pitt.edu/people/thanos-tzounopoulos
• Propose a scholarship and invite students who are studying tinnitus, worldwide (read Kelpies post).
• Schulich Medicine, University of Western Ontario (Brian Allman) https://www.schulich.uwo.ca/anatomy/people/bios/faculty/allman_brian.html
• Research for better diagnostics
• Georgetown University Medical Center (Josef Rauschecker) https://linc.georgetown.edu/josef-rauschecker

 

A good idea. I like it a lot.

With regards to Prof. Tzounopoulos and his research, if the above is true then I'd rather see the money go elsewhere (to Josef P Rauschecker of Georgetown University, Washington, D.C. e.g.).

100% yes.

 

Now that I can see the money will go to research I have donated to Danny’s fund.

Sorry it’s not much but that’s all I can afford considering my financial situation after a job loss.

That’s the least I can do but please let me know if I can help in other ways too.

I was thinking of writing a letter to prof Rauschecker?
Has anyone done that?

 

Thanks for the very generous donation, Val. Although, if you haven’t got a job (or are struggling for money) then you really didn’t have to give so much, but it is hugely appreciated.

Welcome aboard.

 

Always onboard to support proper medical research or Tinnitus Talk!

Hope I can help in other ways too!

 

http://houghear.org/support-hei/
https://hearinghealthfoundation.org/donate

consider donating to them for finding treatments for tinnitus/hearing loss

 

Ok, any other additions or alterations before I make a poll later today?

• Michigan Medicine, University of Michigan (Dr Susan Shore) https://medicine.umich.edu/dept/khri/susan-e-shore-phd
• Sonic Lab, University of Minnesota http://soniclab.umn.edu/research/neural-beamforming-tinnitus
• Invite international applicants (which the BTA can handle) and select a project based on merit.
• PHRC, University of Pittsburgh (Prof Thanos Tzounopoulos) http://phrc.pitt.edu/people/thanos-tzounopoulos
• Propose a scholarship and invite students who are studying tinnitus, worldwide (read Kelpies post).
• Schulich Medicine, University of Western Ontario (Brian Allman) https://www.schulich.uwo.ca/anatomy/people/bios/faculty/allman_brian.html
• Research for better diagnostics
• Georgetown University Medical Center (Josef Rauschecker) https://linc.georgetown.edu/josef-rauschecker
• Hough Ear Institute, http://houghear.org/support-hei/
• Hearing Health Foundation, https://hearinghealthfoundation.org/donate

 

@Ed209
Perhaps, we should also consider Professor Berthold Langguth, who leads the research of tinnitus in the clinic Neuromod.

He will also be one of the speakers at the Tinnitus Expo.

https://www.neuromoddevices.com

 

I have not been in touch with Prof Rauschecker, I only read his abstract from the last TRI Conference.

Ed, Thanks very much for arranging all this. How do you see this working? Would the donation be to Prof Rauscheckers lab for tinnitus research in general or would he and Professors Allman, Tzounopoulos and Shore and others be invited to submit a project first and then one would be chosen?

TC

 

Any tinnitus research project that connects to an University does not need funds. The University of Michigan raised 4 billion dollars just last year. All medical research fund accounts for large universities are loaded with cash. Endowment funds are a major tax write-off for corporations and the super rich. There is some tinnitus research taking place at universities as private. This is because the university doesn't believe the research is noteworthy, but these studies are still allowed to use the university seal.

 

Does this mean Professor Tzounopoulos, Susan Shore, Josef Rauschecker don't need donations from the tinnitus community? Universities cover the costs?

 

The University of Michigan grants allotment funding of 15,000 on a contracted continuous basis per study. I would have to research your other two mentions to see what their funding status is. Any studies that are private that use the university seal usually get free resources such as space and equipment costs, but salaries can be restricted. All of this also depends on contracted royally and profit agreements. Some researchers just want to keep all the profit so universities won't pay salaries.

There really is plenty of funding for legitimate studies. It's all about finding things that work. There are certain things that will help some, but medical communities would adopt because it's too time consuming, therefore not profitable.

This is the trick. Federal funds must be allocated as Medicare and hospitals/healthcare then need to adopt and accept federal sponsor successful study results as treatment.

 

To Dr. Tzounopoulos. Awareness won't help anyone. A pill to ease the loudness will.

 

Hi TC, Sharing 4K would be pointless in my opinion. The aim of this thread is to get a common consensus, amongst donors, about what we want to do with the money. The bullet points in my previous post were the current voting options as proposed by people in their comments.

The second thing you mentioned falls in line with what David Stockdale said which is currently a voting option. However, I highly doubt that the people you mentioned would submit for 4K which is why we’ve got to be clever about our plans, or try and raise more money. I will set up a poll in the coming hours and will likely let it run for a couple of weeks. We will then let donors vote on what they would prefer to happen and we will do as the majority wish. If for some reason an idea becomes unfeasible, for whatever reason, we will default to the second most popular option. There is obviously some due diligence involved once we know what path the majority want to take.

Hi Greg, do you propose we remove the Universities as a voting option? Is there another way of getting the money directly to the researchers? There’s a lot to think about. If there is a way we can give directly - so the money can be used on their projects - and not be eaten in overheads, then it becomes appealing. However, I’m not sure if this is possible.