Possible Treatment Is Found — Hough Ear Institute Needs Our Financial Support

[IvanRus]

Comrades, this thread is about the nonprofit research institution, the Hough Ear Institute.

http://houghear.org/cause/hair-cell-regeneration/

The general director of Hough Ear Institute suffers from hearing and tinnitus himself.

They declare that they are close to real discovery of treatment / regeneration of hearing.

But to achieve this they need our financial support. Government grants have declined sharply (which is a total absurdity on the part of the government authorities, which spends 2 billion a year on hearing impairment, rather than investing several million to develop treatment).

The Hough Ear Institute is truly inspiring, and gives a lot of hope for many of us.

I think we should try to help them somehow.

Is it possible to contact people like Digby Cook who has hearing loss and maintains a journal - https://www.hearinglossjournal.com/, communicating with researchers and so on.

This is historically important.

 

[annV]

They declare that they are close to real discovery of treatment / regeneration of hearing.

If they were close to treatment, the big pharma would pick their work up and provide them with billions.

They are claiming they are close to finding a treatment so that they can rip people off and pay for their director's newest Lamborghini.

Prove me wrong!?

 

[derpytia]

More information is definitely needed here.

What exactly is it that they're working on?
Where are the results of whatever they're working on to back up these claims?
Why is it that companies like Decibel and Frequency are getting money and attention and, until now, not many people have even heard from Hough Ear Institute and they've failed to get the money needed to make this big breakthrough?

Things aren't adding up and I think it's fair to question them right and left about this "big breakthrough" before donating any amount of money and calling it "historically important".

 

[1000]

2 more years... They mention neither tinnitus nor hyperacusis...

 

[IvanRus]

If they were close to treatment, the big pharma would pick their work up and provide them with billions.

This is not necessarily so.

They are claiming they are close to finding a treatment so that they can rip people off and pay for their director's newest Lamborghini.

In our position, such excessive skepticism is harmful.

They have been engaged in research for more than 20 years. It is a non-profit organization that does not have regular investors, there is no marketer who would deal with public relations.

They work only on the means of government grants and private donations.

In fact, the market is not as ideal as you imagine, and even if someone theoretically has a revolutionary medicine, it does not promise them billions of investments from all sides.

If you do not believe this, you can read the life story of Robert Langer.

They have real results and real publications in serious scientific journals.

Of course, you can choose not to trust anyone and not donate to anyone, but instead just sit and wait for a miracle overnight. But that is an irrational position.

 

[IvanRus]

2 more years... They mention neither tinnitus nor hyperacusis...

Did you still not understand that tinnitus and hyperacusis is not an independent disease, but only a symptom of death and desynchronization of hair cells in the cochlea?

You need to treat the cause, not the symptom.

Of course, if the cells are healthy and functional, tinnitus will disappear in 99%.

 

[IvanRus]

More information is definitely needed here.

I think many answers to these questions you can find yourself, to begin with just by visiting their site.

http://houghear.org/

 

[derpytia]

I think many answers to these questions you can find yourself, to begin with just by visiting their site.

http://houghear.org/

Again, more information needed. I see a "something potentially awesome" without stating what that exactly is.
I see a "We are working on a new project with inner ear sensory hair cell regeneration." without them stating exactly how they're going about it.

On their http://houghear.org/cause/research/ page I see a lot of projects but not any proof or validation or progress show on what they've discovered for those projects or how their research or testing is going.

If I'm going to be donating my money to someone, I want to know where it's going, how it's going to be used, what is being done with money already, and whether what I'm donating my money to is viable.

If I'm missing anything, please direct me to where I need to look.

 

[Greg Sacramento]

@derpytia @annV I had already researched this one and their BOD

CEO HEI > Founder - >>>> https://www.prnewswire.com/news-rel...y-from-the-hough-ear-institute-300150403.html

 

[Contrast]

I am 100% for supporting this research but many other bio companies and researchers as well already can regenerate adult mammalian hair cells for a little over a decade.

2006

 

[derpytia]

@derpytia @annV I had already researched this one and their BOD

CEO HEI > Founder - >>>> https://www.prnewswire.com/news-rel...y-from-the-hough-ear-institute-300150403.html

Thank you Greg!

 

[Soren]

So what I'm hearing is let's wait and see what they come up with and then give them money.

But this is self-defeating The goal post is always to move.

They are not there, they are still not there yes and so on.

How many people are active on this forum, 1000-2000-3000, more?

As community we could take the wheel and give them and others a push.

So what if nothing comes of it?

That is the risk we have to take. In our situation we can`t be picky.

I would say that if money from the tinnitus community had come to researchers over the past 10 year we would be a lot closer to the goal of a cure.

 

[Contrast]

Did you still not understand that tinnitus and hyperacusis is not an independent disease, but only a symptom of death and desynchronization of hair cells in the cochlea?

You need to treat the cause, not the symptom.

Of course, if the cells are healthy and functional, tinnitus will disappear in 99%.

Research suggest it should help tinnitus, but hyperacusis (with pain) may have different pathologies. Let's not assume.

https://www.tinnitustalk.com/threads/inner-ear-hair-cell-regeneration-—-maybe-we-can-know-more.3131/page-127#post-360596
Evidence why hair cell regeneration should reduce tinnitus

 

[Ed209]

So what I'm hearing is let's wait and see what they come up with and then give them money.

But this is self-defeating The goal post is always to move.

They are not there, they are still not there yes and so on.

How many people are active on this forum, 1000-2000-3000, more?

As community we could take the wheel and give them and others a push.

So what if nothing comes of it?

That is the risk we have to take. In our situation we can`t be picky.

I would say that if money from the tinnitus community had come to researchers over the past 10 year we would be a lot closer to the goal of a cure.

I've been saying this for a long time but it's like flogging a dead horse, to be honest. No-one is prepared to do anything to objectively help the cause which is a real shame.

There are a small minority who are the exception to this, but if more got involved, we could collectively make a difference in many ways.

 

[Greg Sacramento]

I've been saying this for a long time but it's like flogging a dead horse, to be honest. No-one is prepared to do anything to objectively help the cause which is a real shame.

There are a small minority who are the exception to this, but if more got involved, we could collectively make a difference in many ways.

Treat the disease or conditions that cause not only tinnitus, but other problems. By treating disease and conditions tinnitus will receive a benefit. Why does tinnitus need to the only condition mentioned in the title! Many are upset that a cure for tinnitus has not been found. There may never be one cure for tinnitus as its caused by many things and interactions. We would be able to raise more awareness if we used open- ended study titles. There's plenty of research being done for disease and conditions that can not only cause tinnitus, but OTHER problems that also can mess more with one's tinnitus. Many researchers that have great concerns about tinnitus agree.

I don't think that we disagree, it's just wording.

David of the BTA has stated their position of financial support for certain research where they have non involvement. The BTA may support MOST tinnitus research, but they understandably can't do all it with their funds. Go back and read what David mentioned per the subject for drugs as a tinnitus treatment. He said this in a answer to one of my questions and questions from others. The BTA offers awareness and education, support and education for those with tinnitus and ways to cope. I support the positions of the BTA and other tinnitus awareness and support groups, but let's not involve special support interests which I don't think the BTA is involved with.

 

[Ed209]

Treat the disease or conditions that cause not only tinnitus, but other problems. By treating disease and conditions tinnitus will receive a benefit. Why does tinnitus need to the only condition mentioned in the title! Many are upset that a cure for tinnitus has not been found. There may never be one cure for tinnitus as its caused by many things and interactions. We would be able to raise more awareness if we used open- ended study titles. There's plenty of research being done for disease and conditions that can not only cause tinnitus, but OTHER problems that also can mess more with one's tinnitus. Many researchers that have great concerns about tinnitus agree.

I don't think that we disagree, it's just wording.

David of the BTA has stated their position of financial support for certain research where they have non involvement. The BTA may support MOST tinnitus research, but they understandably can't do all it with their funds. Go back and read what David mentioned per the subject for drugs as a tinnitus treatment. He said this in a answer to one of my questions and questions from others. The BTA offers awareness and education, support and education for those with tinnitus and ways to cope. I support the positions of the BTA and other tinnitus awareness and support groups, but let's not involve special support interests which I don't think the BTA is involved with.

Greg, my comment above refers to the tinnitus community engaging in any activity that helps. Not just the current fundraiser.

I note that we couldn't even get 50 people to donate to Tinnitus Talk - who provide this platform free of charge - and that was with prize money involved. The work that goes on here behind the scenes is phenomenal, and they are providing this platform so that everybody can have a voice.

I've tried many times before to suggest awareness campaigns and no one ever showed any interest. I put a thread on here about Facebook donations, and again, nobody replied. I noticed @Soren tried to get something going on Twitter (which I'm not on) and again the lack of interest speaks volumes to me. I can't understand why hardly anybody wants to do any real campaign work - of any kind - but many will post on here all day complaining about the lack thereof.

It's interesting to note that this section of the forum is one of the least active parts. I'm now convinced that we would struggle to motivate people, even if a cure was announced, with the additional news that it needed funding to get to market (in a hypothetical reality of course).

There are loads of great people on here don't get me wrong, but everywhere I look that is associated with tinnitus I see enormous amounts of apathy. I couldn't even get a major tinnitus charity to share Danny's Fund on Facebook (it takes two seconds and costs nothing!). Yet, it raises much needed awareness if nothing else. And then I noticed @Samantha R struggled and ultimately failed to share it on one of the largest tinnitus groups on Facebook.

I've been doing this quite a while now and the longer you do it for the more you realise that nobody cares, or at least very few do. Tinnitus related charity work must be amongst the most challenging there is and this is demonstrated by the fact that not a single tinnitus charity made it into the top 1000 in the U.K.

It can be incredibly frustrating, which is why I applaud the work that Tinnitus Hub does. I can assure you that it is one of the most difficult jobs one can do, and it is all done so selflessly. There are no ads and no-one is spamming you for money all the time (except me maybe ), but hey, I'm just a third party who wishes more could be done by us all collectively.

 

[Greg Sacramento]

@Ed209,

I don't disagree as I'm in support of research, but I don't know of a condition that just causes tinnitus with no other medical and well being complications. We do need more awareness and that will help in getting the medical care system more on board.

Some go to an ENT with tinnitus and tell them that my face, jaw or neck hurts. Some ENTs will then offer a MRI, but other ENTs will say 'live with your tinnitus', without helping to assist the patient in finding out what's wrong with the patient's neck or face. Some can't afford a dentist, never mind a possible needed appliance. After one gets tinnitus the medical community needs more awareness, concern and education. I know this as I was part of the largest medical care system in the Western USA.

I know a high corporate at a cell phone company thru a relative. Them, like all the Standard & Poor largest companies donate a small fraction of very product sold to medical research. The phone maker supposedly donated to several causes that use associated condition apps on their phones. I asked how much was given to an actual tinnitus research project. He again responded by saying that they donated considerably to ear noise volume research. To me, that could mean two things - one being association to sound measuring for apps. The other being the effect of sound on the ear when using the phone or listening to music.

More tinnitus and condition awareness from the medical care system and compassionate care associations should be where it all begins.

 

[TuxedoCat]

I couldn't even get a major tinnitus charity to share Danny's Fund on Facebook (it takes two seconds and costs nothing!).

If this was the ATA then the fundraiser for Danny was running at the same time as Michael Haar's family was running theirs. Both are competing for money from the same pool of donors. I wonder if it crossed the minds of Michael Haar's family to contact BTA or Tinnitus Hub and ask if they could post a fundraiser here. There is full page ad in Tinnitus Today for the Haar's fundraiser.

Some can't afford a dentist, never mind a possible needed appliance.

.The American Dental Association's website has an area called Public Programs. I picked this up from there- Many dentists volunteer their time at local community health centers. Federally qualified health centers provide care to individuals regardless of their inability to pay. Find a community health center on the HRSA web site.

Are you are suggesting that we set up a fund for helping those in need to which we can donate? If so, how would it be administered?

Treat the disease or conditions that cause not only tinnitus, but other problems. By treating disease and conditions tinnitus will receive a benefit. Why does tinnitus need to the only condition mentioned in the title! Many are upset that a cure for tinnitus has not been found. There may never be one cure for tinnitus as its caused by many things and interactions.

I'm uncertain about what it is you are suggesting- Is it do a study among a population of adults with arthritis and tinnitus. Then treat the arthritis and see if the tinnitus improves. ??

Many thanks, TC

 

[Greg Sacramento]

Is it do a study among a population of adults with arthritis and tinnitus. Then treat the arthritis and see if the tinnitus improves. ??

Yes - We who have tinnitus are good people and should be treated by the medical community and community as such. I don't know if that barrier can ever be broken.

 

[Ed209]

If this was the ATA then the fundraiser for Danny was running at the same time as Michael Haar's family was running theirs. Both are competing for money from the same pool of donors. I wonder if it crossed the minds of Michael Haar's family to contact BTA or Tinnitus Hub and ask if they could post a fundraiser here. There is full page ad in Tinnitus Today for the Haar's fundraiser.

No, it wasn't the ATA. They shared it without any issue.

 

[derpytia]

My last 2 cents for this thread. Yes, donate where you can. Yes, donate to people actively working on things that could benefit us. But please donate responsibly and carefully. Like making the heralded "educated guess", make "educated donations". There are plenty of reasons for us sufferers who are normal people and not industry professionals to be wary and skeptical which I will not go into on here.

Disclaimer: This is advice, not end-all be-all answer. Please make your own informed opinions about donations, research, etc. We're all people with brains that can think and tinnitus here.

 

[TuxedoCat]

No, it wasn't the ATA. They shared it without any issue.

I'll look into the timing and cost of adverts in Tinnitus Today (ATA) and Quiet (BTA) for Danny's fund. Not saying we should run adverts since the idea here was to use social media but it would be good to know for next time. TC

 

[Ed209]

I'll look into the timing and cost of adverts in Tinnitus Today (ATA) and Quiet (BTA) for Danny's fund. Not saying we should run adverts since the idea here was to use social media but it would be good to know for next time. TC

I paid for a couple of targeted ads on Facebook, but they didn't generate a single donation (to the best of my knowledge), which was disappointing. I should have just put the ad money into the fund, but I figured it was worth a punt to maximise my money's potential.

There's no harm looking into their respective magazines, though. However, my opinion is that most of the magazine readers have likely already been exposed to it.

 

[TuxedoCat]

Yes - We who have tinnitus are good people and should be treated by the medical community and community as such. I don't know if that barrier can ever be broken.

I think that comes down to raising awareness among medical professionals, beginning with the Primary Care Practioners. That may or may not be a tough nut to crack. One approach might be to publish case studies, that's the least robust of the clinical evidence. Another thought would be to offer Continuing Education course to Primary Care Practioners. They are probably required to earn a certain amount of CE credits to maintain their license.

Medical marketing is a field in and of itself. Perhaps @David would have some insights.

TC

 

[TuxedoCat]

I paid for a couple of targeted ads on Facebook, but they didn't generate a single donation (to the best of my knowledge), which was disappointing. I should have just put the ad money into the fund, but I figured it was worth a punt to maximise my moneys potential.

You never know until you try.

There's no harm looking into their respective magazines, though. However, my opinion is that most of the magazine readers have likely already been exposed to it.

Good point, I can ask about that. I've never seen Quiet and am assuming I should contact Nic Wray. She seems to do a lot of the communications for BTA.

TC

 

[Emanuel Lourenco]

Of course, you can choose not to trust anyone and not donate to anyone, but instead just sit and wait for a miracle overnight. But that is an irrational position.

That's pretty much what most people do hence why breakthroughs come once in a lifetime. It is a diabolical loop ahah we don't trust corporations because they screw you, then some good corporations in the crowd can't do shit because they have no support because we don't trust them

 

[coffee_girl]

I looked them up and seriously, nah. Sketchy asf and some serious scammy activity, I was tricked before with Susan G Koman's cancer foundation...i won't be tricked again. People can hate all they want, T sufferers are the easiest to victimize because we are all so desperate for a cure...donate your cars, your house, and your spouse away but you always gotta question the folks you are giving your hard earned money to. I can definitely wait forever for a cure, i'll see in a few years if this organization ever even gets anywhere then ill donate.

 

[JohnAdams]

So what I'm hearing is let's wait and see what they come up with and then give them money.

What I'm hearing is "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE".

 

[IvanRus]

I can definitely wait forever for a cure, i'll see in a few years if this organization ever even gets anywhere then ill donate.

Well, this is a very wrong and unreasonable position.

I see that many have succumbed to someone else's opinion, for example, to the opinion of @annV, which is absurd.

I am truly amazed at you, people who show some kind of overwhelming distrust of the Hough Ear Institute.

Who made you think this way? Tell me!

This company has been engaged in real scientific development for more than 20 years.
They have a serious laboratory, a serious scientific staff, publications in the most reputable scientific journals. Prizes and grants that they have won from the government, proving the usefulness and importance of their activities.

And you so freely declare that they are scammers?!

How long can we wait? There is nothing or nobody to wait for. Life is short, you live only a moment on this planet. There will be no other life.

There is only the here and now. We are either really investing in revolutionary technologies, or we are waiting for a miracle from heaven, waiting for someone to solve all the problems for you and bring them on a silver platter.

 

[lymebite]

Who made you think this way? Tell me!

Many humans have the "crabs in a bucket" mentality, I think this explains much negativity. One crab tries to escape, the other crabs don't like to see him succeed, they pull him back down into the bucket!

https://en.m.wikipedia.org/wiki/Crab_mentality

Crab mentality or crabs in a bucket (also barrel, basket or pot) is a way of thinking best described by the phrase "if I can't have it, neither can you". The metaphor refers to a pattern of behaviour noted in crabs when they are trapped in a bucket. While any one crab could easily escape, its efforts will be undermined by others, ensuring the group's collective demise.

The analogy in human behaviour is claimed to be that members of a group will attempt to reduce the self-confidence of any member who achieves success beyond the others, out of envy, resentment, spite, conspiracy, or competitive feelings, to halt their progress.