New Funding Opportunity for Tinnitus Research / Investing in Tinnitus Research

[jazz]

A French tinnitus patient organization is now funding research into tinnitus and hyperacusis. They've turned to the Tinnitus Research Initiative to help with research selection. Here's the information from the TRI site:

The French Tinnitus-Patients-Organization, France Acouphènes, is willing to fund innovative research projects on Tinnitus and/or Hyperacusis.

TRI will assist in the selection process and provide scientific advice for the funding decision.
The proposed research proposal should have a clinical focus and direct therapeutic implications.
Proposals from French researchers and/or clinicians or in which French researchers and/or clinicians are co-investigators will be preferred.

The provided budget is 28.000,00 EUR and co-financing by other funders are eligible.

Source: http://tinnitusresearch.org/

 

[Miss lavender]

I am sorry if this has been discussed in the past, but I have to have my say. I am certainly no expert when it comes to medical practices and funding. Why on earth has there never been the opportunity to have the public( meaning all tinnitus sufferers) donate what they can to tinnitus research. I don't mean to the ATA or the like, I mean for individual trials etc. Even if all the millions of people with tinnitus just gave $5.00 for example there would be lots of money for progress. Please excuse any naivety on my part but it makes me angry and makes no sense that we are not able to do this.

 

[jazz]

I am sorry if this has been discussed in the past, but I have to have my say. I am certainly no expert when it comes to medical practices and funding. Why on earth has there never been the opportunity to have the public( meaning all tinnitus sufferers) donate what they can to tinnitus research. I don't mean to the ATA or the like, I mean for individual trials etc. Even if all the millions of people with tinnitus just gave $5.00 for example there would be lots of money for progress. Please excuse any naivety on my part but it makes me angry and makes no sense that we are not able to do this.

@Miss lavender Lack of funding is the number one obstacle to a cure. No doubt!

I agree you need more sources of funding, but I believe some type of organization is needed to direct research. Nonprofit organizations always have Scientific Advisory Boards to review research proposals; these boards are comprised of men and women who are typically well known researchers with the education and experience to determine which proposals should and should not get funded.

Regarding public funding for clinical trials, this approach probably won't succeed. That's because most people with tinnitus do not contribute to research. Just look at this board. We have many loyal members who truly value what this board offers, but have yet contribute to TT or the ATA or the TRI. Why? It's a difficult question, but I believe with any disease or illness only a percentage of the public donates. Most money for research comes through corporate funding, other nonprofit funding (some nonprofits are formed specifically to fund research), government funding, and venture capitalism. The public also helps--but their amount is much smaller than these others sources.

That said, I agree a more democratic approach to research should be initiated. And I'd love to see the current organizations--or new ones--become more receptive to input from tinnitus sufferers. Indeed a Consumer Advisory Board--as an adjunct to the Scientific Advisory Board--might be very helpful to determine tinnitus research policy and priorities. Such a board might also be invaluable for idea generation on reaching more tinnitus sufferers. The current tinnitus organizations--while conducting solid research into the basic science of tinnitus as well as developing treatment modalities to lessen its effects--appear to be indifferent to public input. (At least, this is my impression of the ATA; I don't know about the TRI.)

 

[cmurem]

Why don't we organise and donate directly to the Stanford Initiative as Tinnitus Talk members? We will also encourage other forums, facebook groups and pages to donate. Before organising we can contact to Stanford to prepare a new page to show the total money donated before we start this donating initiative. Then we will see our impact.

 

[EddyLee]

Can't we make something like kickstarter.com for tinnitus research?
I would donate whatever amount i can afford to tinnitus researcher like Dr Roland Schaette of BTA for example.
http://www.tinnitus.org.uk/research

 

[cmurem]

Does ATA for example, show how the donations spread, where did they go, which research in which institutions or clinics, have been done and how was their specific expenditure? I think if they give detailed explanation of trak of funds or give the individuals choice to donate to the specific institutions or researches it would be better and more encouraging for individuals to donate..

 

[Markku]

Does ATA for example, show how the donations spread, where did they go, which research in which institutions or clinics, have been done and how was their specific expenditure? I think if they give detailed explanation of trak of funds or give the individuals choice to donate to the specific institutions or researches it would be better and more encouraging for individuals to donate..

http://www.ata.org/research/ata-funded

 

[gary]

I am sorry if this has been discussed in the past, but I have to have my say. I am certainly no expert when it comes to medical practices and funding. Why on earth has there never been the opportunity to have the public( meaning all tinnitus sufferers) donate what they can to tinnitus research. I don't mean to the ATA or the like, I mean for individual trials etc. Even if all the millions of people with tinnitus just gave $5.00 for example there would be lots of money for progress. Please excuse any naivety on my part but it makes me angry and makes no sense that we are not able to do this.

Good point, but look at all the members here that do not support this group.

 

[daedalus]

I really hope the TRI will do the scientific assesement alone without meddling from France Acouphènes. If anyone takes such a small grant. I have had very painful discussions with staff members of FA -including their extremely intellectually limited president- and it is obvious they do not have the smallest clue about how science works.

And their "preference for French researchers" is ludicrous. What would people say if the ATA favoured US researchers !

Which lead us to the idea of direct funding of tinnitus research by the public. Look at how many buy scam "cures" and how few contribute to the ATA. Understanding of science by the public -and even many applied science or medecine graduates for that matter- is appealing and direct funders would be unable to tell genuine research from the innumerous scams out there.

No, we need credible scientific committees to steer the scarce funding. We are lucky enough that the ATA staff members are scientifically litterate enough. I have talked with three other patient organisations and was depressed by the results.

If a kickstarter should be done, i think it shoulld be done by the ATA or the TRI.

 

[Hopeful]

How much money is in tinnitus research worldwide? How much of this money is spend on 'finding a cure' rather than the cognitive/behavioral/masking stuff? How big are the hearing aids companies in the tinnitus business? And in what way do they 'prevent proper tinnitus research' from happening in order to sell masking devices?

edit: just wanted to specify, that I did not intend to belittle the above mentioned research paths.

 

[jazz]

How much money is in tinnitus research worldwide? How much of this money is spend on 'finding a cure' rather than the cognitive/behavioral/masking stuff? How big are the hearing aids companies in the tinnitus business? And in what way do they 'prevent proper tinnitus research' from happening in order to sell masking devices?

edit: just wanted to specify, that I did not intend to belittle the above mentioned research paths.

@Hopeful Those are good questions, but I don't believe all the financial information is available. You can find bits of financial information on the ATA's site as well as charity navigator. But there's no centralized organization that keeps track of research monies and how they are allocated.

The best source for tinnitus projects I've found is a commercial site and it's quite expensive. It doesn't list nonproft funding, but it does list the current state of tinnitus research and projects. See http://www.researchandmarkets.com/research/plqtgb/tinnitus

Perhaps, you or anyone else could find other sources and post? I've searched to no avail, but everyone has their unique research methodologies.

 

[jazz]

@daedalus The ATA has a new director; she appears young and is undoubtedly more tech savvy than previous directors. Do you think she'd be amenable to something like a kickstarter? While I'd prefer the ATA to raise money through traditional means--like government grants, other philanthropies, corporations, etc.--the organization has not been laudable at funding raising. Their greatest success is from the US government and especially its Department of Defense. And that success is recent and dependant on a fickle Congress. Traditionally, the ATA has relied primarily on their membershp base, which is too small to be a meaningful source of revenue. For example, the new ATA director recently wrote how members have funded "over $5 million" in research grants over a forty plus year period. (See http://www.ata.org/get-involved/donate-campaign). In my humble opinion, that amount over forty plus years sounds paltry. The ATA is a respected national nonprofit organization with international clout.

With this record, the ATA doing a kickstarter does not sound ridiculous. It sounds smart. Look at the ATA's recent Walk to Silence Tinnitus and its current Summit for Silence, the latter attaining $50K of its $100K goal. (See http://www.ata.org/donna-brown-2013) Members do support the ATA. But the ATA needs to broaden its reach and increase its membership base. Doing a kickstarter is one way to increase awareness, and the ATA will also reach a younger audience--who are at the greatest risk for developing tinnitus with the plethora of iPods and other portable music players used by this demographic. Nonprofits need to be savvy and diversify their revenue sources, and crowd funding is one method to be utlized.

About the French patient organization directing research, I'm sure the TRI won't allow the group to make scientific decisions on research funding. But perhaps the French group will suggest areas of study--from proposals that the TRI has already approved and believe worthy of being funded. I don't particularly like this idea either, but tinnitus organizations do need funding. If every national patient organization donated something like $50K (which I believe is similar to the Euro amount the French group has donated), the TRI would have a nice base to utilize for funding--besides the grants that they already get from the ATA.

Everyone interested in tinnitus research knows the field is terribly underfunded. But instead of decrying this, it's time to rectify it. "Better to light a candle than to curse the darkness" is a wise saying. Or, as applied to tinnitus research, "Better to seek funding solutions than to complain about funding problems."

 

[EddyLee]

I can see that ATA can do a very successful kickstarter type of funding,

1) Identify potential research/researchers that lacks funding and introduce them and how their research can lead to T cure or treatment.

2) Contact some of the celebrities with T here for support to create awareness and buzz
https://www.tinnitustalk.com/threads/famous-people-with-tinnitus.37/

3) Setup the crowd funding page and receive donation. Give a deadline like 2 months and get the ball rolling.

4) Setup reward for backers. E.g.
Tier 1 $10 - access to research team daily blog/diary
Tier 2 $20 - access to research forum, ask the researcher question!
Tier 3 $50 - t-shirt
Tier 4 $100 - a chance to participate in earlier clinical test
Tier 5 $500 - guarantee to participate in earlier clinical test
.
.
.
Tier 9 $5000 - lunch with research team.
Tier 10 $5000 - lunch with celebrity with T.

4) Repeat this kickstarter activity every year.

Probably will raise more than 10 mil or more in 2 months every year!

 

[jazz]

@EddyLee Several of your ideas are interesting! And I love the celebrity angle. Star power is always desirable! But you can't charge to participate in early clinical trials; that would be unethical. Some of your other ideas also would be a nonstarter--for example, accessing researchers' notes. I can't imagine researchers permitting this. Of course, you wouldn't know these things, and it's good to test ideas. The ATA would need to develop an acceptable rewards strategy based on other successful efforts from similar nonprofit organizations. That said, it would be nice if the ATA also accepted suggestions from the public. You never know who might come up with a million dollar idea!

 

[EddyLee]

Hi @jazz , i think the reward to participate in earlier test will probably be the most attractive to T backers. Maybe it's a little unethical but hey if we need to find a cure for T we need to go all out no holds barred. We need a revolution!

 

[James White]

Everything in relation with medical stuff on Kickstarter is not allowed.

 

[EddyLee]

Everything in relation with medical stuff on Kickstarter is not allowed.

Just make some webpages similar to kickstarter.
www.ata.org/research-kickstarter
I can do the webpages and it's functions totally free for ATA if they want

Could someone who has contact with any T organization please convince them to start doing something similar for funding. Notice how many games/products has been able to start production since kickstarter.
The T research field will probably move forward ten times faster!

 

[Hopeful]

It is so hard for me to actually understand the amount of research going on. Believing what has already been said in this thread it's ridiculously little!

My hypothesis is, that people out there think, as I did until recently, something along the lines of:

'This affects so many people of course there are billions put in research for a cure'.

This, supposedly, could not be more untrue?

I think what we need is to find out the anual research budget, create our own 'international tinnitus sufferes independent organization (yadda yadda)' and tell people how bad the situation actually is.

I don't know. I'm just assuming that the research budgets are so small because the people finding the money are doing a bad job?

I really am sure that there are so much potential research money out there not being grabbed. As someone mentioned earlier - why don't all the major record companies, the big musicians, the music industry as a whole, thom yorke, eric clapton, neil young, beethoven (oh wait...) donate large amounts of money? What is it with this taboo in the music industry? Why don't they want to talk about it? Don't they want a cure? I doubt it. Insurance, you say - i never understood that one.

 

[daedalus]

I do not have much to add to what Jazz and Markku said.

28 000 € are 37 000 $. And it is a budget cumulated over several years. And France has a population estimated at 65 million people ! I don't know how many is that several but it means the North Americans donate several times what the French give. Some of them give to the ATA though. Some of them even give to the ATA and the TRI but refuse to give to FA. So i wouldn't say the ATA is doing a particularly bad job.

Simply put, few people donate for a cure. It would be interesting to know how much cancer or migraine patients spend in medical bills and how much they invest in cancer or migraine research.

Funding research is a bit like planting a tree. An investment for the future. Few people plant trees.

About celebrities with tinnitus, i am sure the tinnitus advocates have already contacted many of them and like with most tinnitus sufferers, most of them aren't simply interested. Shatner is implicated in tinnitus fundraising. I have spotted Steve Martin giving 10 000 $ to the last walk for a cure.

And i have no idea about the capabilities of miss James.

 

[Erlend]

I think the best thing to do if you want donations is having a CLEAR goal.
"Tinnitus research" Not even I want to contribute.

But the stem cell thing sounded really good. If money could go towards something where there is legitimate reason for hope, I think that would help.

Isn't the stem cell thing something of actual potential?

Basically: Just a more spesific goal could help a lot to get people to donate I think. And especially if you have a "roof". "We need 1000000000000000$ We currently have 12444444$. When a "goal" for something is defined I think more people will donate.

Is stem cell research for tinnitus the most promising alternative at the moment?

 

[James White]

@Erlend stem cell research is "mainly" for restoring normal hearing from loss. It's not for tinnitus directly, but the theory is "no more hearing loss, no more tinnitus"

 

[Erlend]

If it restores damage in the ear in a way that can restore hearing, I assume it could help fixing whatever damage is responsible for T and/or H as well?

 

[James White]

If it restores damage in the ear in a way that can restore hearing, I assume it could help fixing whatever damage is responsible for T and/or H as well?

yes

 

[cmurem]

Actually i do not pay any attention to the researches which are about hearing devices or medications for manupilating the brain to reduce T. I would rather to support researces which aim to repair the tissues and solve the problem from the root cause.

 

[Erlend]

If only Donald Trump or Bill Gates got tinnitus...

 

[erik]

Good ideas on this thread. I think the main thing with tinnitus and lack of funding is that up until recently, tinnitus was not taken seriously or even seen as a real health problem. I mean millions of people have tinnitus, but only a very small fraction are bothered by it or consider it a problem.

When 100 people get cancer, it is a problem for all 100 people. When 100 people get T, maybe 1 or 2 out of that 100 are really bothered by it, the others for some reason or another don't think it's an issue. Throw in the fact that many people who get T get it temporarily, it goes away and they don't give it a second thought. Others get T and it may be a problem for a few weeks, months or even years but eventually most get past it and it becomes a non-issue.

Look at the traffic on Tinnitus Talk. You have the veterans who are on here frequently but a good percentage of the posters are from new members. They get T. Search the internet for answers. Find Tinnitus Talk. They find answers, post for a while, then disappear or post less and less as time goes on. Why? Is it because their T goes away. Maybe. It could also be that they find the info they are look for, learn ways to cope and move on. And this cycle repeats over and over. It is the same on other Tinnitus sites as well.

Look at all the Celebs who have T. You would think if they wanted to find a cure, they would. But very few of them even donate. It must not be a big issue to the rich and famous.

The ATA got a whopping $1 million in donations last year. Not that impressive for a disorder supposedly millions have. I bet all the panhandlers in my city together earned more than that.

So I think a bulk of donations to ATA and other organizations are from people who give when they first get T or at least in the first few months of having T. At that time, people are frantic for answers or want a cure, so they are more app to give. The longer people have T, the less of a problem it is and the franticness goes away.

BTW: I did donate to the ATA. It was during my first month of having T.

 

[Markku]

Of those who DO experience persistent tinnitus, population studies have shown that about 85% do not find it intrusive, disturbing or anxiety provoking (something tinnitus sufferers find very hard to believe!)

Source: http://tinnitus.org/tinnitus.html

^ indeed @erik. Thanks for the good post.

 

[Danny]

So true. Calling a spade a spade, but I haven't donated to the ATA. False hope.

 

[Hopeful]

When 100 people get T, maybe 1 or 2 out of that 100 are really bothered by it, the others for some reason or another don't think it's an issue (...) Others get T and it may be a problem for a few weeks, months or even years but eventually most get past it and it becomes a non-issue.

Look at the traffic on Tinnitus Talk. You have the veterans who are on here frequently but a good percentage of the posters are from new members. They get T. Search the internet for answers. Find Tinnitus Talk. They find answers, post for a while, then disappear or post less and less as time goes on. Why? Is it because their T goes away. Maybe. It could also be that they find the info they are look for, learn ways to cope and move on. And this cycle repeats over and over. It is the same on other Tinnitus sites as well.

You are told there is nothing you can do - you must accept it. By doctors, ENTs, the internet. In the end you must learn to not let it bother you. But don't you still want it to go away even though it does not bother you?

If you lost a hand. You must learn to use the other hand. Not to be bothered bo not having two. But you still would like it back. It's just not possible.

I know a couple of people in real life who had tinnitus for 10+ years and they something along the line 'well of course it sucks but I'm not bothered/not that bothered by it'.

If a cure existed then how many people with tinnitus would not take it?

 

[James White]

Look at the traffic on Tinnitus Talk. You have the veterans who are on here frequently but a good percentage of the posters are from new members. They get T. Search the internet for answers. Find Tinnitus Talk. They find answers, post for a while, then disappear or post less and less as time goes on. Why? Is it because their T goes away. Maybe. It could also be that they find the info they are look for, learn ways to cope and move on. And this cycle repeats over and over. It is the same on other Tinnitus sites as well.

Interting point of view @erik , i don't consider myself a veteran yet but i could've left this forum a while ago. The fact is i'm now interested in this field and i think tinnitustalk has some really good information. I don't suffer that much from tinnitus, my life is pretty normal except for the music part i had to put on hold. But maybe if my tinnitus stopped tomorrow, i'd leave this forum ... but i'd certainly post here about it ! Not like all these other users that don't come back, strange behaviour isn't it ?