Poll: Why Aren't You Donating to Tinnitus-Related Fundraisers?

[Starthrower]

About almost half of those with tinnitus in the USA who hold employment can't afford tinnitus care.

And insurance in most cases will not cover methods needed. You have to lie and say the treatment is for something else like...anxiety.

I remember back then I got this wonderful thank you note from a migrant worker who wrote very little English. He said because of the $150.oo grant he was able to see a doctor and get help. His family was so thankful for such a small gesture that meant he went back to manual labor and provided for them.

Others had lost jobs and benefits and had to choose between a doctor's visit or food for their children.

This is the side few get to really realize.

And I hope I am not negative. Back in about 2004 or so the ATA had a wonderful staff and they did work hard and took questions from callers for help. They were like a family in Portland, Oregon. They really cared about the cause.

This is where I see Tinnitus Hub/Talk working in both directions. They have my upmost support now.

 

[TuxedoCat]

And I hope I am not negative. Back in about 2004 or so the ATA had a wonderful staff and they did work hard and took questions from callers for help. They were like a family in Portland, Oregon. They really cared about the cause.

@Starthrower

What was William Shatner like back then? He and his wife sponsor horseback riding programs for therapy for children.

 

[Greg Sacramento]

I know a retired couple with gentle souls where the wife had volunteered for many years at a hospital for children. She never had a paying job. They had some money saved for retirement and owned a nice home. He had a small pension and received lower end social security payments. The wife became ill and had to be in a nursing home where Medicare pays for less that 4 months. The cost of the nursing kept rising. One can't be forced to sell their home, but public state assistance is unavailable for those with a nice home. He sold their home because they couldn't afford to keep it.

He couldn't keep the family cat because of where he's living. The cat is an outdoors cat. A neighbor of mine took the cat. I can't sleep at night so I'm often out on my side porch. The cat comes to visit me every night. I appreciate her company as I lost my cat. Such is life.

 

[Samantha R]

I personally donated a decent sum to Danny's fundraiser and I did this because I knew my donation was going to research.

Other than 2 prior one off donations (one to TRI and one to Hearing Health Foundation), I had not donated before to a tinnitus charity.

Let me tell you why.

I live in Australia. There are no 'charities' for tinnitus of any specific note at all.

Any donation I make to an overseas charity is not tax deductible for me (but that actually doesn't bother me).

I once saw an article on a study that the BTA (I think, don't quote me on this) funded. Around 70K pounds was spent on CBT for sleep in tinnitus patients.
I was appalled and felt this to be a huge waste of donated funds and I thought that was most certainly not what I would want my donation spent on.

So that to me is a lack of trust that my money will be used in what I deem as worthwhile activities.

I told my sister about the fundraiser and she said she'd have a look and make a donation. She has suffered from tinnitus for about 7 years and struggled at the beginning as we all can relate to.
I note she did not donate.
My dad has severe tinnitus that doesn't bother him one bit. He laughed when I mentioned the fundraiser, said he'd rather go have a meal at our local pub.
So, the conclusion I draw from this is that if you are fully habituated and not bothered by your tinnitus, then you may not really feel the need to contribute or to treat it cure your tinntitus.

I no longer suffer with tinnitus, it does not bother me in the slightest and it's fairly mild.
However I know all to well the devastation that this condition can unleash in someone and I will never forget how I felt when I first got tinnitus.

Finding the right cause and instilling trust in potential donors is essential to successfully raising funds.

My two cents, hope it helps.

 

[Soren]

When looking at the poll and seeing that the two largest answers are that the money won't make a difference and that the money won't get to the right people.

For the first point about your money not making any difference. Yes it won't make a difference if funding isn't focused. If everybody thinks that way, then yes, it will not make a difference.

But with a large community like this as a backbone great things can happen.

And those whose tinnitus doesn't affect them. Have some empathy. I would say that most of us have had that moment when the needle dropped and we became angry or sad of the situation we are in. It should be a community. One helping another.


For the second point about the money not going to the right people.

But by doing a little research you can find ways to donate directly or nearly directly to the researchers.

Take Dr. Thanos Tzounopoulos and his work with tinnitus.

Through the University of Pittsburgh you can give money to the researchers at the same University.

https://eyeandear.org/make-a-difference/new-projects/

Tinnitus
Thanos Tzounopoulos, PhD, Assistant Professor of Otolaryngology, discovered the source of the tinnitus - the chronic ringing sound suffered by millions of individuals worldwide. The ringing is actually a malfunctioning cellular impulse in the auditory section of the brain. Dr. Tzounopoulos has identified a chemical change responsible for tinnitus. Subsequently, collaboration with the Center for Drug Discovery at the University of Pittsburgh, an agent has been fabricated which has been effective in prevention and relief of the phantom sound. Currently, plans are underway for the necessary testing to make this agent available to trials in humans.​

It does not get more direct than that.

 

[Ed209]

When looking at the poll and seeing that the two largest answers are that the money won't make a difference and that the money won't get to the right people.

For the first point about your money not making any difference. Yes it won't make a difference if funding isn't focused. If everybody thinks that way, then yes, it will not make a difference.

But with a large community like this as a backbone great things can happen.

And those whose tinnitus doesn't affect them. Have some empathy. I would say that most of us have had that moment when the needle dropped and we became angry or sad of the situation we are in. It should be a community. One helping another.


For the second point about the money not going to the right people.

But by doing a little research you can find ways to donate directly or nearly directly to the researchers.

Take Dr. Thanos Tzounopoulos and his work with tinnitus.

Through the University of Pittsburgh you can give money to the researchers at the same University.

https://eyeandear.org/make-a-difference/new-projects/

Tinnitus
Thanos Tzounopoulos, PhD, Assistant Professor of Otolaryngology, discovered the source of the tinnitus - the chronic ringing sound suffered by millions of individuals worldwide. The ringing is actually a malfunctioning cellular impulse in the auditory section of the brain. Dr. Tzounopoulos has identified a chemical change responsible for tinnitus. Subsequently, collaboration with the Center for Drug Discovery at the University of Pittsburgh, an agent has been fabricated which has been effective in prevention and relief of the phantom sound. Currently, plans are underway for the necessary testing to make this agent available to trials in humans.​

It does not get more direct than that.

Hi Soren, first of all thanks for taking an interest and getting involved. I've previously looked into this and also came across this page. However, it would be prudent for us to conduct some due diligence before we hand over our money to whoever, ultimately, becomes our beneficiary.

It would be better to contact someone directly once we know the outcome of the vote. At this point we would be better placed to manoeuvre and can find out details of how they might plan to spend our money. The last thing we all want is to have this money going straight into paying the electric bill or something.

 

[Soren]

Hi Soren, first of all thanks for taking an interest and getting involved. I've previously looked into this and also came across this page. However, it would be prudent for us to conduct some due diligence before we hand over our money to whoever, ultimately, becomes our beneficiary.

It would be better to contact someone directly once we know the outcome of the vote. At this point we would be better placed to manoeuvre and can find out details of how they might plan to spend our money. The last thing we all want is to have this money going straight into paying the electric bill or something.

Of course.

Now on the Pittsburgh Hearing Research Center website under support it says the following:

"Support
Thank you for your interest in the Pittsburgh Hearing Research Center. Gifts are accepted by The Eye & Ear Foundation, an independent 501(c)(3) supporting organization with the mission of advancing the academic and research efforts of the Departments of Otolaryngology and Ophthalmology at the University of Pittsburgh. The ultimate goal of the Foundation is to enhance patient care by advancing leading-edge research.

For more information please contact:
Dr. Thanos Tzounopoulos, director of the PHRC, at 412-383-8626

Thank you!"​

For this research all you have to do is contact the Eye and Ear Foundation or Dr. Thanos (lol) himself, the man behind the research, or both of them.

 

[Greg Sacramento]

Tinnitus can be caused by many things where some causes are by a direct condition or disease. Other causes can be lifestyle. Actual treatment with association to something else can cause tinnitus.

Example - Cause - One cause - gum disease. One life style cause - not brushing teeth. One treatment cause - removing a tooth that realigns the jaw, head and neck.

Tinnitus being caused by a condition or disease - There's plenty of research being done for disease and conditions that cause not only tinnitus, but other problems. Treat the disease or condition and tinnitus will receive a benefit. Why does tinnitus need to be the only condition mentioned in the title of most research. It doesn't. Some special interest groups want tinnitus in the title because of the nature of their business - a product or service that directing associates with hearing and tinnitus.

Products that you buy in the grocery store, any store or online donate a small fraction to medical research.
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What we need is more money spent on care and medical awareness of those with tinnitus

Several times when I saw a doctor for a condition including ER care, I mentioned that I have tinnitus. A drug or prescription is offered to me. I will say that this drug placed in this IV or this prescription drug can cause or increase tinnitus. Their answer is "you would know more about that than me."

All ENT clinics owned by hospitals in my area see many patients. The ENT protocol, their protocol - has a long checklist of questions that ENTs should ask their patients. A list of procedures and exams that should be done. This all takes two hours at minimum. How many ENTs spend two hours with a patient.

Many with tinnitus can't afford a mouth guard or a hearing aide. In the US very few insurance plans will cover a hearing aide. Dental costs have IP limitations. Medicare often will not explore a cause of tinnitus - only a specific medical problem. If you have dizziness then that is examined - hopefully.

Research funds are everywhere, but compassionate care is not. We do need new high tech to examine the ear and brain and government should be more involved in granting university funding for that instead of spending money to built a new gadget for NASA. My opinion.

One thing that discourages my neuro is that he will give a printout of instructions for self care and some patients wouldn't even bother to read the information - never mind follow the self care instructions. He said that some of his patients want a wonder pill and won't bother with posture or exercises.

 

[Ed209]

For this research all you have to do is contact the Eye and Ear Foundation or Dr. Thanos (lol) himself, the man behind the research, or both of them.

We can't really do this until next week as we don't know who the beneficiary is yet. It would be better to call when we're in a position to, potentially, give the money to him.

If someone wants to ring him in the meantime to discuss the donation process then I'd welcome it. I'm not from America so this would cost me a fortune.

 

[Soren]

We can't really do this until next week as we don't know who the beneficiary is yet. It would be better to call when we're in a position to, potentially, give the money to him.

If someone wants to ring him in the meantime to discuss the donation process then I'd welcome it. I'm not from America so this would cost me a fortune.

For Danny's fundraiser of course wait for the poll to end. But my first post was a response to those who don't donate. But I hope Thanos wins the poll and loses to the Avengers.

 

[david c]

I once saw an article on a study that the BTA (I think, don't quote me on this) funded. Around 70K pounds was spent on CBT for sleep in tinnitus patients.
I was appalled and felt this to be a huge waste of donated funds and I thought that was most certainly not what I would want my donation spent on.

You're right Samantha - this was a BTA study and it was a waste of money. That's one reason why, having given money to the BTA for research in the past and not been impressed with how the money is spent, I personally won't donate to them again.

 

[Greg Sacramento]

We can't really do this until next week as we don't know who the beneficiary is yet. It would be better to call when we're in a position to, potentially, give the money to him

Why not call the Professor and ask him about funding status which would include the university hospital and medical endowment funds from the university. Better yet, call a venture capitalist and ask her/him to do this. I did.

 

[Soren]

Why not call the Professor and ask him about funding status which would include the university hospital and medical endowment funds from the university. Better yet, call a venture capitalist and ask her/him to do this. I did.

Could you help with the venture capitalist seeing as you have done it before?

 

[Ed209]

Why not call the Professor and ask him about funding status which would include the university hospital and medical endowment funds from the university. Better yet, call a venture capitalist and ask her/him to do this. I did.

I'm not in the states, Greg, otherwise I would have done it weeks ago. Like I said in my last post, if anyone in the US wants to do this I'd appreciate it.

 

[GregCA]

Better yet, call a venture capitalist and ask her/him to do this. I did.

I'm confused by those sentences.
About the first one: what is it exactly that you want the Venture Capitalist to do?
About the second one: what did you do exactly?

 

[Greg Sacramento]

Could you help with the venture capitalist seeing as you have done it before?

Hi Soren: I rather not because it's hearsay. Venture capitalists and other monetary and legal professionals have tools for doing this. If there's any association of funding on a State university level or private university/association then that State's taxpayers has rights to know the amounts.

There's many agencies within US State structure that has information on particular subject matter such as this. State politicians can have an aide find information such as this in a matter of minutes. Alumni of any university can also make a request as to funding status unless it's an university government security contract. There's many ways to find information per this topic. A lot of surprising information is buried deep on the internet when it comes to universities and non profits.

 

[Samantha R]

You're right Samantha - this was a BTA study and it was a waste of money. That's one reason why, having given money to the BTA for research in the past and not been impressed with how the money is spent, I personally won't donate to them again.

The difference with this fundraiser is that this money IS going 100% to research. This is what I needed to be comfortable about donating.

I absolutely love that about this fundraiser, and as such, I have donated a reasonably generous amount.

I hope others can also do the same.

If we come together, we have an amazing opportunity to do something really great and most importantly, help ourselves!

 

[david c]

The difference with this fundraiser is that this money IS going 100% to research. This is what I needed to be comfortable about donating.

I absolutely love that about this fundraiser, and as such, I have donated a reasonably generous amount.

I hope others can also do the same.

If we come together, we have an amazing opportunity to do something really great and most importantly, help ourselves!

I'm really glad that the thread I created:
https://www.tinnitustalk.com/threads/more-about-the-bta-and-tinnitus.30823/
has raised awareness of the BTA's flawed research strategy and its entire focus on management strategies research of the type you have criticised. I think this has raised the pressure on the BTA and I suspect they'll be reluctant to continue down this path.

Fortunately as you say with this fundraiser - to which I also donated - it looks like it will go to a worthy cause. I did notice David Stockdale's (BTA head) attempt to steer it to "management strategies" with his talk about "silencing tinnitus" which is a notorious management strategies euphemism, but it looks like that was rumbled and the votes have gone against his suggestion so far.

 

[Jazzer]

On a personal note.
About six years back I was a bandleader, and had been for five years.
I was approached by somebody wishing to put on a Jazz & Gospel evening in a big church in Hastings, the proceeds of which would go to an appeal to support the MacMillan nurses.

Tragically, cancer had struck our immediate family several times.
At that time the going rate for a gig was £500.
(Jazz has been poorly paid for years.)

Now we travelled all over the place in my band wagon: we were mates, chatted, argued, bitched, laughed and hugged each other.
(Just like Tinnitus Talk.)
I booked my band for the gig, and was happy to pay the bill.
Not once did it occur to me to quiz them on their attitude to giving.
It was my charity, my choice, and my responsibility.
I suppose what I could have done was given them all a questionnaire re: personal attitudes to giving.
We had a great night, and raised £1200 on the night.
I guess we all think differently.
Let's face it - we're all human beans.

 

[GregCA]

Now we travelled all over the place in my band wagon: we were mates, chatted, argued, bitched, laughed and hugged each other.
(Just like Tinnitus Talk.)
I booked my band for the gig, and was happy to pay the bill.
Not once did it occur to me to quiz them on their attitude to giving.
It was my charity, my choice, and my responsibility.
I suppose what I could have done was given them all a questionnaire re: personal attitudes to giving.
We had a great night, and raised £1200 on the night.
I guess we all think differently.
Let's face it - we're all human beans.

I sense a bit of confusion as to the purpose of the poll. It has nothing to do with personal attitudes to giving. It specifically focuses on impediments to giving, and only from folks who feel comfortable doing so.

The reason this is important is that we noticed a big difference between tinnitus fundraising and other causes, and wanted to understand what the tinnitus-specific impediments were, because you can't fix what you haven't identified as a problem. The results of the poll are interesting, IMHO: at least I have personally learned something from it.

I suggest reading the original message I wrote when I created this poll: perhaps it explains it better than I am doing it here.

Lastly, understanding these impediments will help us address them, which will lead to better fundraising, which will lead to better chances for a cure. I think we can at least agree that it is a worthy goal.

 

[Jazzer]

I sense a bit of confusion as to the purpose of the poll. It has nothing to do with personal attitudes to giving. It specifically focuses on impediments to giving, and only from folks who feel comfortable doing so.

The reason this is important is that we noticed a big difference between tinnitus fundraising and other causes, and wanted to understand what the tinnitus-specific impediments were, because you can't fix what you haven't identified as a problem. The results of the poll are interesting, IMHO: at least I have personally learned something from it.

I suggest reading the original message I wrote when I created this poll: perhaps it explains it better than I am doing it here.

Lastly, understanding these impediments will help us address them, which will lead to better fundraising, which will lead to better chances for a cure. I think we can at least agree that it is a worthy goal.

No quarrel with this whatsoever Greg.

There was a very different questionnaire, specifically asking:

How much
To whom
How frequently
etc....

- very personal I thought.

If I was clever at looking back through old posts I might be able to find it.
I'll try...?

 

[Jazzer]

Now if I'm honest I did find this a tad intrusive.

'Some people just don't give, period. My parents were like that. They would give a donation at church, but that was it. Eventually, they stopped going to church and giving.
I know your survey is about giving to tinnitus, but you might want to ask about giving in general -
How often do you give to other charities, churches or causes?
Sometimes
Regularly
Never.'

Perhaps I am thin skinned - I don't really know?