We Need More Research Into Potassium Channel Modulators

[dan]

I propose to write up a petition to the American Tinnitus Association to start investing a better part into potassium channel modulators. I mean why aren't they doing round the clock testing of every postassium modulator known to man? Almost every pre-clinical Potassium modulator trial is/was successful, so why are they still sitting on this??? WTF?

 

[Steve]

@jchinnis As a member of the board, how would you recommend that donors can influence the research goals of the ATA, is there a formal process?

@dan These trials can cost a lot, any company taking part will probably want to develop a modified version they can get exclusivity on, plus they may not be too happy about a charity having a stake in a commercial business.

If there was a way it could be done it does seem like it could be a good use of research money. If the ATA helped develop a drug that worked for even 20% of patients, imagine the revenue into the charity to research something that helps even more? It would be an amazing snowball effect.

 

[Telis]

You won't need ATA if autifony has any success at all. A hint of success and big pharma everywhere will come out of the woodwork with all kinds of capital to invest. The race will be on.

If this is the actual route, the dollars will chase it down quickly.

Anyway, this is your opinion (and some here at TT) as to where to funnel money, I'm sure a lot of the tinnitus world would disagree.

Most of us here at TT are not scientists or doctors, just a group of people suffering and latching on to any hope.

To me, a rat model, and a great theory are not enough for me to buy in fully. I'm sure the ATA would feel the same.

Just my opinion!

Autifony could just be another pump and dump company like the millions before it. A great story/theory and bam....bankrupt.

I don't believe any of it until I see solid proof on a human test model.

I wish I could buy in, but somehow I am skeptical. I also believe that while enduring this hell (tinnitus) we will grasp on to anything that seems feasible....We are not thinking as critically as we would be normally.

Sorry if I sound negative. I hope I am wrong and everyone can come back and call me a idiot!

 

[dan]

I believe in the rat model lol.

 

[Grace]

Autifony could just be another pump and dump company like the millions before it. A great story/theory and bam....bankrupt.

I don't believe any of it until I see solid proof on a human test model.

I wish I could buy in, but somehow I am skeptical. I also believe that while enduring this hell (tinnitus) we will grasp on to anything that seems feasible....We are not thinking as critically as we would be normally.

Sorry if I sound negative. I hope I am wrong and everyone can come back and call me a idiot!

Yup guilty until proven innocent. Its something to hope on though and sounds so good to be true but now we just wait until the trials and find out.

I believe in the rat model lol.

Yeah i wanna believe in those rats too! Lol

 

[rtwombly]

Well, a lot of us are taking Mpt's experience with retigabine as a sign that Autifony is on the right track. The science sounds good.

But one thing I think needs pointing out is that it's all very new science. It's not like somebody went to ATA and said, "Hey, we figured out this tinnitus thing! It's hyperactive potassium channels!" and the ATA tried to shush them up. It's a very new theory, and in my mind it's been remarkably quick us getting to this point, when we're about to get real human trials of a potential cure. It's tough waiting, I know, but there's no policy at the ATA that says they won't put research money into potassium channel modulators. Though, why would they have to? There would have to be a double-blind, placebo-controlled study before any drug got on the market, and Autifony is about to go into phase 2 of that right now.

 

[Telis]

I would like to see Mpt go off retigabine...now that would be telling! But for now it's one guy! The other three have mixed results...not very convincing to me.

 

[RichL]

Hope I don't get into trouble with this post but my personal opinion on ATA is that they seem to me to be on a big power tripping agenda!
Really anyone that has had anything to do with organisations that push hard for funds from public donations and lotto grants etc will already know that the handful at the top who are paying themselves hefty salary's from donated money will lose a good thing and do what they can to hinder real scientific study into complete cures!

It's like Greenpeace, they don't want a complete end to world pollution, if it does then the hundreds that are getting shiploads of money from suckers that donate thousands to them, will have to get off the gravy train and stop getting paid hundreds of thousands for doing nothing but organize sit ins and protests!

What the ATA have done thus far have yet to convinced me of anything else!

Really, truly hope that ATA prove me wrong by getting behind this if stage II is a success, but I won't be holding my breath!

Rich

 

[lapidus]

I want more people from ATA on this messeage board. This is the best T community on the internet today and ATA should really "get down" with the people to see what the patients (us) want them to do with our donated money.

https://www.tinnitustalk.com/thread...ng-smartphone-technology-clinical-trial.5592/
This is what the ATA is doing now. No wonder people lose their trust in them. I can't say that I agree fully with what RichL said but I can totally see where he's coming from.

 

[RichL]

I got in trouble with a scathing post on that thread so I will limit my response to it!

But like I said, I really hope I am proven wrong!

Rich

 

[Markku]

I want more people from ATA on this messeage board. This is the best T community on the internet today and ATA should really "get down" with the people to see what the patients (us) want them to do with our donated money.

https://www.tinnitustalk.com/thread...ng-smartphone-technology-clinical-trial.5592/
This is what the ATA is doing now. No wonder people lose their trust in them. I can't say that I agree fully with what RichL said but I can totally see where he's coming from.

In ATA's defense, they are not funding that study.

It states:
Please Note: The American Tinnitus Association is promoting this clinical trial for informational purposes only. ATA is neither a sponsor nor an organizer of the trial, which is wholly coordinated by Washington University in St. Louis.

 

[RichL]

In ATA's defense, they are not funding that study.

It states:
Please Note: The American Tinnitus Association is promoting this clinical trial for informational purposes only. ATA is neither a sponsor nor an organizer of the trial, which is wholly coordinated by Washington University in St. Louis.

Your right @Markku and they do specifically state that, but I know if I was ATA and some Dr contacted me to advertise there absolutely pointless and unhelpful to anyone study, I would politely tell them to take a flying leap!

 

[xmierce]

I have been on non-profit boards in the past without any compensation outside of the occasional expense of face to face board meetings. Looking at ATA and their annual reports and audits I do not see anything wrong with what they are doing as a not for profit organization to support our mission for a cure. Yes, you will have weird request on studies on tinnitus but not a cure but that is not a bad thing. If anything it brings awareness to more people about this condition and that will help with the end result of a cure.

ATA should be shouting at the rooftops about the need for a cure.. Working with the veterans that got this condition serving our country.. People that have been in accidents or got this from a virus.. From the outside audit in 2012 I do not see them abusing funds. Not all people will agree what ATA does just like any other organization.. This is NOT the American Cancer Society that brings in millions and millions of dollars a year or the United Way.. At least we have an organization that represents us and I have no problem being a member of the ATA.

 

[tomytl]

I have been on non-profit boards in the past without any compensation outside of the occasional expense of face to face board meetings. Looking at ATA and their annual reports and audits I do not see anything wrong with what they are doing as a not for profit organization to support our mission for a cure. Yes, you will have weird request on studies on tinnitus but not a cure but that is not a bad thing. If anything it brings awareness to more people about this condition and that will help with the end result of a cure.

ATA should be shouting at the rooftops about the need for a cure.. Working with the veterans that got this condition serving our country.. People that have been in accidents or got this from a virus.. From the outside audit in 2012 I do not see them abusing funds. Not all people will agree what ATA does just like any other organization.. This is NOT the American Cancer Society that brings in millions and millions of dollars a year or the United Way.. At least we have an organization that represents us and I have no problem being a member of the ATA.

Thank you for posting this! I am absolutely agree. We should't tend to put all organisations in a corner.
Everywhere is money needed and if the organisation reaches a bigger scale it needs an administration and professionals.

 

[jazz]

ATA should be shouting at the rooftops about the need for a cure..

Yes, the ATA does not do enough to promote tinnitus and raise awareness. That's their fatal flaw. But they do not give their officers large salaries. Not at all. They are frugal with everything.

Yet their core beliefs cannot produce enough funds for tinnitus research. These beliefs are:

1) tinnitus should be self-funded by sufferers

2) the federal government should fund most tinnitus research

That said, the ATA does a great job lobbying. But there's not enough congressional funds available for tinnitus research. If anyone knows US politics, they know how dysfunctional our Congress is! Many don't even believe in evolution, and some of these members sit on the House's scientific committee.

The ATA means well, but they need to be proactive in promoting research. They need to make tinnitus a recognizable and important health problem. Just because it's not cancer does not mean it's not important. In addition, the ATA needs to forge more corporate and philanthropic relationships to increase funding and visibility. They need to look to at the Hearing Health Foundation for ideas.

And the ATA is aware of potassium channel modulators for tinnitus through a professor at the Univ of Pittsburgh, who is studying Retigabine and tinnitus. He's trying to rework the drug to eliminate some of its side effects. That researcher, I believe, received ATA grants or else the ATA was influential in his funding. Going forward, I'm sure more projects will be approved that examine potassium channel modulators' role tinnitus.

 

[RichL]

Yes, the ATA does not do enough to promote tinnitus and raise awareness. That's their fatal flaw. But they do not give their officers large salaries. Not at all. They are frugal with everything.

Yet their core beliefs cannot produce enough funds for tinnitus research. These beliefs are:

1) tinnitus should be self-funded by sufferers

2) the federal government should fund most tinnitus research

That said, the ATA does a great job lobbying. But there's not enough congressional funds available for tinnitus research. If anyone knows US politics, they know how dysfunctional our Congress is! Many don't even believe in evolution, and some of these members sit on the House's scientific committee.

The ATA means well, but they need to be proactive in promoting research. They need to make tinnitus a recognizable and important health problem. Just because it's not cancer does not mean it's not important. In addition, the ATA needs to forge more corporate and philanthropic relationships to increase funding and visibility. They need to look to at the Hearing Health Foundation for ideas.

And the ATA is aware of potassium channel modulators for tinnitus through a professor at the Univ of Pittsburgh, who is studying Retigabine and tinnitus. He's trying to rework the drug to eliminate some of its side effects. That researcher, I believe, received ATA grants or else the ATA was influential in his funding. Going forward, I'm sure more projects will be approved that examine potassium channel modulators' role tinnitus.

This sounds great and I hope that you are correct with these assertions but I will see what happens if phase II is successful and the ATA shows pro activeness in backing it to the hilt!

Only then will I take back my tar brush!

 

[xmierce]

Yes, the ATA does not do enough to promote tinnitus and raise awareness. That's their fatal flaw. But they do not give their officers large salaries. Not at all. They are frugal with everything.

Totally understand what you are saying Jazz and your right, officers do not have large salaries but the monies are suppose to go to research grants.. It is kind of a catch-22. If you want to have an Executive Director with a lot of influence, connections with high profile sponsors and Congress then ATA will have to pay for it. Executive Directors are there for a cause but like all of us they need to be rewarded for their expertise.

I am sure Cara Jones is doing a good job as an Executive Director. I saw a PR on three grants for around 110K for research studies for a cure.. 110K is nice but spilt across 3 studies is not nearly enough. If we want change we all need to get involved..

The Board of Directors sets the strategic direction. The ED is the one who executes the direction. The Board of Directors approves the budget for the ATA and the compensation package for the ED.. That is the way it ran when I was on other not-for-profit boards. Dr. Nagler was on the ATA board and frequents this forum (but recently took a break). I am sure he can add more. I am rambling a bit but I guess the bottom line is not with the ATA staff but the Board of Directors that set the direction for the association.

 

[RichL]

They are tied up with TRT, which is big business, just like neuromonics.

I really hope that in this instance 2+2 doesn't equal 4 but it is hard not to make this assumption!

Please ATA get behind some real science and prove my fears are unfounded!

 

[dan]

Totally understand what you are saying Jazz and your right, officers do not have large salary.......Dr. Nagler was on the ATA board and frequents this forum (but recently took a break). I am sure he can add more. I am rambling a bit but I guess the bottom line is not with the ATA staff but the Board of Directors that set the direction for the association.

You mean the same Dr. Nagler who strongly believes and said throughout (quote from this board not too long ago) :

"No, I do not believe that there will ever be a cure for tinnitus."

 

[xmierce]

You mean the same Dr. Nagler who strongly believes and said throughout (quote from this board not too long ago) :

"No, I do not believe that there will ever be a cure for tinnitus."

Same person.. yes.. I personally do not believe that statement or what context that statement is.. His personal believe in coping is TRT and "I don't care" method. It's more of trying to not to let the mind get in the way of your life and it works for him. Cure is a word with a lot of different meanings. I personally think we would have a reduction of tinnitus volume with medicine, AM-101 or something in that nature then move to a cure. I would be just fine with lowering the volume myself for now and I think you would be as well.

The more awareness and funding on these project the faster we can get to a cure and that is the key..

 

[Martin69]

You mean the same Dr. Nagler who strongly believes and said throughout (quote from this board not too long ago) :

"No, I do not believe that there will ever be a cure for tinnitus."

Dan, just curious. How is your T?
Are you ok with it?
So if ther never will be a cure, how do you life with it and how do you manage?
Besides that I also do not put too much hope into a cure.

 

[Stina]

Dan, just curious. How is your T?
Are you ok with it?
So if ther never will be a cure, how do you life with it and how do you manage?
Besides that I also do not put too much hope into a cure.

I agree. I do think there might be effective treatments, but not a cure. How many diseases/injuries even have cures? for example even if you break a bone which is self-healing it will be the same as before - eg. it will never heal completely. Yes maybe there will be smth to reduce/help prevent reduce the volume, but at this point it is hardly unlikely in the closest 10-20 years there will be smth to guarantee "original ears". And even if there is smth to treat it, we will still have to protect our ears, avoid loud situations and other possible triggers. Therefore focusing on funding TRT is not a bad idea- it helps people cope with the disease now. For most its much harder to hope for smth that is uncertain and that they can' help along if they can just accept the situation and move on (Im talking about the regular patient, not scientists and investors who have to have hope).

 

[Denny]

Most things being researched may take years to ever come to market and
If they are threats to current treatments or big corporations they will never make
It to market. I hate to be so pessimistic but there are very few cures except for antibiotics
And that's the way big pharma likes it.

 

[lapidus]

If they are threats to current treatments or big corporations they will never make It to market.

What do you mean? There are no treatments for T today, therefore nothing to threat. Or do you mean that TRT providers actively try to stop the research towards working medical treatments because that would make them useless? I'm not sure I'm following. Please elaborate.

 

[Denny]

What do you mean? There are no treatments for T today, therefore nothing to threat. Or do you mean that TRT providers actively try to stop the research towards working medical treatments because that would make them useless? I'm not sure I'm following. Please elaborate.

Firstly tinnitus is not a disease it is a symptom of something else(hearing loss etc...)
Tinnitus gets no priority in funding
Current treatments for tinnitus trt, neuromonics focus on the patient changing their
Focus and helping them to habituate.
There are no pharmaceutical , chemical or herbal cures for tinnitus.
If a small company had discovered a compound that looked promising
And it became a threat to hearing aid companies and others that treat tinnitus
And the billions in revenue it would not be welcomed so quickly.

I will give an example of big pharma
Glaxo use to sell a drug Zantac biggest seller worldwide for
Peptic ulcer etc
30 years ago an Australian scientist found h pylori bacteria
Caused ulcers. This research was squashed by big pharma since
Many companies made acid blockers.
30 years later when all those acid blockers are off patent
We are treating h pylori for many ulcers in the medical community.

 

[lapidus]

Firstly tinnitus is not a disease it is a symptom of something else(hearing loss etc...)
Tinnitus gets no priority in funding
Current treatments for tinnitus trt, neuromonics focus on the patient changing their
Focus and helping them to habituate.
There are no pharmaceutical , chemical or herbal cures for tinnitus.
If a small company had discovered a compound that looked promising
And it became a threat to hearing aid companies and others that treat tinnitus
And the billions in revenue it would not be welcomed so quickly.

I will give an example of big pharma
Glaxo use to sell a drug Zantac biggest seller worldwide for
Peptic ulcer etc
30 years ago an Australian scientist found h pylori bacteria
Caused ulcers. This research was squashed by big pharma since
Many companies made acid blockers.
30 years later when all those acid blockers are off patent
We are treating h pylori for many ulcers in the medical community.

That sounds horrible and down right criminal. So the ATA is trying to stop the good research for a medical treatment since they work together with TRT providers and hearing aid companies? Is the world really this corrupt and false? Are ATA, TRT providers and hearing aid companies trying to stop Autifony right now?

 

[Denny]

That sounds horrible and down right criminal. So the ATA is trying to stop the good research for a medical treatment since they work together with TRT providers and hearing aid companies? Is the world really this corrupt and false? Are ATA, TRT providers and hearing aid companies trying to stop Autifony right now?

I do not know anything about ata or any other organizations. But I am
Just making a point when big money is involved big business will do their
Best to defend their interests.

 

[dan]

So that's why I am saying that WE, the tinnitus suffering community needs to get involved in the decision making process of organizations such as the ATA.

The BTA will be announcing the Autifony tinnitus drug UK trials. Will the ATA be announcing the Autifony hearing drug trials in the USA?
Is the ATA involved in tinnitus drug research - for which drugs ?
These are the questions we must ask.

 

[RichL]

Same person.. yes.. I personally do not believe that statement or what context that statement is.. His personal believe in coping is TRT and "I don't care" method. It's more of trying to not to let the mind get in the way of your life and it works for him. Cure is a word with a lot of different meanings. I personally think we would have a reduction of tinnitus volume with medicine, AM-101 or something in that nature then move to a cure. I would be just fine with lowering the volume myself for now and I think you would be as well.

The more awareness and funding on these project the faster we can get to a cure and that is the key..

Are you saying you don't believe that Dr Naglar said this? because I can point you to the thread where he says this exact statement!
I can also state his reason for coming to that conclusion as well if you like?

 

[xmierce]

Are you saying you don't believe that Dr Naglar said this? because I can point you to the thread where he says this exact statement!
I can also state his reason for coming to that conclusion as well if you like?

No.. I said I do not personally believe in that statement from Dr. Naglar in context but I understand why he is saying this. I asked him that same question in person and he detailed his personal belief with the "I do not care" statement with an understanding of why. People can be obsessed with a cure but not focus on how they can cope today. They can spend months or years on the Internet seeing hundreds of sites that say "cure" and marketed as a "cure" such as "SoundCure". SoundCure is not a cure its a coping treatment. This can be depressing to be in a wait and see mode rather then doing what you can now to enjoy the life you have. That is what I believe Dr. Naglar is trying to say.

So bottom line.. Yes I believe in a cure in the future. What is a cure? Is it a pill you take twice a day with little to no side effects? Is it an injection into the middle ear once every six months? It is a laser light in your ears every month? Is it a one time procedure that cures you to life with the regeneration of hair cells?

If any of the above questions actually work than I am all for it. Just hope I can afford it.. So the definition of "cure" is subjective as well.

When will we have some type of cure? That is the question for everyone.. We need more funding.. I love to see ATA hire someone as a ED or communication director that is a retired 4-star general to go lobby in Congress for more funds to fix this. I can promise you more funding will be granted in return.. The political impact would be huge. BTA can do something similar . Just my opinion.