Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

[attheedgeofscience]

@attheedgeofscience @Markku and all that are helping push our cause, Thank you, from the bottom of my heart. I was one that did not wanted anybody on my facebook to know that I have T... but I have come to realize that that will not help me..us. WE need to start telling the WORLD about T and how it affects our lives daily. I did advertising and Public Relations for years... it works. It changes perceptions, opinions, mind sets, habits...views, hearts. Don't despair, there will be a cure for T. Even if not in our lifetime, but for our children and grandchildren. And that a lone is worth fighting for NOW.

Thank you for your words: appreciation is the only "payment" people like me get. The author, Sam Harris, has done a blog on tinnitus. He is a well known figure (and neuro-scientist). He - for one - has spoken openly about tinnitus:

www.samharris.org/blog/item/adventures-in-the-land-of-illness

And he is quite influential - some 300k followers on Twitter:

https://twitter.com/SamHarrisOrg?ref_src=twsrc^google|twcamp^serp|twgr^author

In addition, I would like to say that the angle we, in [USERGROUP=11]@Team Trobalt[/USERGROUP], have tried to push has been very scientific. And generally science is easier to share than alternative medicine. It's more "neutral" - and not open to ridicule. At least that is my opinion.

Personally, I have no problem mentioning that I have tinnitus (also on Facebook). Perhaps it is because I have had it all my life, and so, for me it is part of who I am. Not something to escape in relation to my surroundings.

 

[Pumpkin]

Well it'd be better to just educate our children and grandchildren about t than have them get t and wait for a pill to pass clinical trials.

Unfortunately @undecided tinnitus cannot always be avoided!

 

[OnceUponaTime]

Unfortunately @undecided tinnitus cannot always be avoided!

This is true.

 

[undecided]

Unfortunately @undecided tinnitus cannot always be avoided!

I suppose so. In numerous cases though, it could be avoided or minimized.

 

[Michael2013]

In addition, I would like to say that the angle we, in [USERGROUP=11]@Team Trobalt[/USERGROUP], have tried to push has been very scientific.

Maybe that was the problem?

I'm just catching up on this thread, and I'm a bit appalled to read page after page of you blaming the tinnitus community for the failure of Team Trobalt. You talk about facts and how the truth hurts. Well, the truth is YOU failed. You failed as a leader and Team Trobalt failed (apparently) on what it set out to achieve. Maybe instead of blaming everybody else for not actively joining the cause, maybe you (or the next person to pick it up) ought to start asking what went wrong and how to do it differently next time.

A good leader isn't going to blame the community for being lethargic, they will blame themselves for failing to find a successful way to mobilize them.

Add me in the list of people who never saw anything about Team Trobalt on Facebook.

-Mike

 

[attheedgeofscience]

I'm just catching up on this thread, and I'm a bit appalled to read page after page of you blaming the tinnitus community for the failure of Team Trobalt. You talk about facts and how the truth hurts. Well, the truth is YOU failed. You failed as a leader and Team Trobalt failed (apparently) on what it set out to achieve. Maybe instead of blaming everybody else for not actively joining the cause, maybe you (or the next person to pick it up) ought to start asking what went wrong and how to do it differently next time.

You are indeed right. I failed. Or we set the bar too high.

I don't know.

But I do know that I will be on my way again: there is no need for bad leaders here. Especially the unpaid ones. Good luck to everyone.

 

[linearb]

I don't think anybody is saying that hard problems aren't hard--in fact that I think is in essence what I was also trying to say. And nobody is suggesting that simply sharing facebook statuses would change the world. But it is indicative of the type of action that we need to have and symbolic of a lack of action. I certainly hope I didn't come off condescending in my message because that certainly isn't the intent.

sorry if I came on too strong there, and I wasn't really responding to you or most anyone else too specifically. I just don't necessarily agree there's a specific lack of attention on this issue; most people I've encountered are aware to some degree of tinnitus and think it's really shitty; there are just so many things that impose physical misery on the world, and one of them will affect 100% of people at some point in their lives.

And, things really are getting better. If AUT was completely wrong about Kv3.1 as a target, it still means that they went from a theoretical molecular model of a specific transmitter receptor, to a physically tested synthetic ligand of that exact receptor in a matter of a few years. That would have been absolute science fiction 25-30 years ago.

I really wish this one drug had been a silver bullet, but it doesn't shock me to see it end this way, and that is a big reason that I don't let myself get too caught up in hoping about any given thing that doesn't actually exist yet. It'll be great if they come up with a better cure in the next 3-5-10 years, but I have a life to lead in the meantime, and if you cured me tomorrow I'd probably see every minute I'd spent thinking about that eventuality to be wasted time...

 

[dan]

@attheedgeofscience do you have any information on when the USA hearing loss trials are concluding and are they have any success so far. Basically any information. My thinking is if it works for hearing loss and it gets approved for that then tinnitus sufferers can get this drug off label as usual we do. Do you have any comments ?

 

[Michael2013]

But I do know that I will be on my way again: there is no need for bad leaders here. Especially the unpaid ones. Good luck to everyone.

Nobody is saying you should leave because Team Trobalt did not achieve what it set out to do or because you're a bad leader. The next best thing that could come from all the previous work is to learn from it, improve it, and try again.

"Every great and deep difficulty bears in itself its own solution. It forces us to change our thinking in order to find it."

-Mike

 

[attheedgeofscience]

@attheedgeofscience do you have any information on when the USA hearing loss trials are concluding and are they have any success so far. Basically any information. My thinking is if it works for hearing loss and it gets approved for that then tinnitus sufferers can get this drug off label as usual we do. Do you have any comments ?

See this post of mine which indicates that trials with AUT00063 will be continuing with CLARITY-1:

www.tinnitustalk.com/threads/autifony-therapeutics-phase-ii-study-for-aut00063-for-the-treatment-of-hearing-loss-and-tinnitus.6516/page-105#post-141726

 

[attheedgeofscience]

The next best thing that could come from all the previous work is to learn from it, improve it, and try again.

Oh no... I am not spending +500 hours of my unpaid time again. That I can assure you. Bad leader or not. And indeed, it was never my intention to do any specific visible work on TinnitusTalk again. If you notice, I don't carry the Team Trobalt badge anymore. And also: I haven't posted anything for many months. I only joined this thread because certain events coincided with each other. Otherwise I wouldn't have posted anything.

I learnt a long time ago that with tinnitus, it is best to do things on your own. Behind-the-scenes. Not that I have to, of course.

All the best to everyone. Especially given the situation that has occurred today.

 

[jeff W]

Well it'd be better to just educate our children and grandchildren about t than have them get t and wait for a pill to pass clinical trials.

agreed and screen for genes to prevent also.

 

[Michael2013]

Oh no... I am not spending +500 hours of my unpaid time again. That I can assure you. Bad leader or not. And indeed, it was never my intention to do any specific visible work on TinnitusTalk again.

That's understandable. Maybe you already did something like this, but I would hope Team Trobalt could put together some kind of lessons learned document so that the next effort can learn from it. Knowing what worked and what didn't work can help the next person or people in the future.

I stopped visiting as much several months ago as well, so I hadn't noticed your activity dropped.

-Mike

 

[jeff W]

Guys, this is in one way is a big step, it has shown the pharma model up for the imposter that it really is. Essentially bathing the brain in chemicals is an old capitalist model for disease, money first and patient second, now its looking like cellular repair is back on the cards, of course there is no business model for this, but with the ever growing incompetence within otolaryngology/otology in dealing with hearing disorders. I am sure someone will come in to fill the gap. With mutebutton falling and now this: roll on the failure of pharma as we shift to cell based therapy.

 

[David King]

At least the honesty is admirable.

 

[dan]

Let's hope it passes phase 3 in the USA for hearing loss, then we can all try this drug off label as it is safer than other drugs I hope. Tinnitus, the off label disease.

 

[OnceUponaTime]

But I do know that I will be on my way again: there is no need for bad leaders here. Especially the unpaid ones. Good luck to everyone.

Very sad to see you go. Please do not let this event make you feel like you failed... you didn't. You actually gave lots of us faith and hope and important information and we appreciate that. Please do not bail on us now. You are an asset to TT. See if after you calm down you reconsider. Today I cant seem to get away from TT.... too much in our minds right now. (Wanted to send this in private but I couldn't.)

 

[Atlantis]

Autifony had a dozen trial sites across the UK.

The trial had been going on for, what, 12 months?

Final countdown: 58 TEST SUBJECTS ENROLLED

I believe I have read Autifony had 150+ spots for the trial. Only 58 enrolled!

People don't suffer from this condition... they get used to it...

 

[attheedgeofscience]

Maybe you already did something like this, but I would hope Team Trobalt could put together some kind of lessons learned document so that the next effort can learn from it.

Listen... it was never my intention to return. But some unique developments unfolded these past days, and, I added my input to this thread. In addition, and because of the events of today, I made the tinnitus community the following deal:

www.tinnitustalk.com/threads/autifony-therapeutics-phase-ii-study-for-aut00063-for-the-treatment-of-hearing-loss-and-tinnitus.6516/page-105#post-141744

This is not a discussion about bad or good leader. Advocacy has no leader. There is a deal on the table. If you, or someone, would like to get involved: go right ahead. You are most welcome - and I hope someone will do it! I will do my bit, when somebody else has done theirs. These are the terms. Accept them or don't. It makes no difference to me, since I am not paid by anyone in any event, right?

And so far, just 10 extra clicks on the FB-link in the thread above (even though this thread has been viewed some 2,000 times today).

Knowing what worked and what didn't work can help the next person or people in the future.

We already know what worked: doing things in a focused way behind the scenes. See this thread as example of that:

www.tinnitustalk.com/threads/auris-medical-the-first-corporate-sponsor-of-tinnitus-talk.11325/#post-139169

 

[billie48]

That is a sad news indeed for many T sufferers. Hopefully this doesn't stop other companies or Autifony itself to continue their pursuit of a drug solution to T particularly for severe T which many sufferers find tough to habituate to.

 

[Danny Boy]

That is a sad news indeed for many T sufferers. Hopefully this doesn't stop other companies or Autifony itself to continue their pursuit of a drug solution to T particularly for severe T which many sufferers find tough to habituate to.

Could always try Perampanel or Brivaracetam...

 

[amandine]

That's understandable. Maybe you already did something like this, but I would hope Team Trobalt could put together some kind of lessons learned document so that the next effort can learn from it. Knowing what worked and what didn't work can help the next person or people in the future.

This is not a discussion about bad or good leader. Advocacy has no leader. There is a deal on the table. If you, or someone, would like to get involved: go right ahead. You are most welcome - and I hope someone will do it! I will do my bit, when somebody else has done theirs. These are the terms. Accept them or don't. It makes no difference to me, since I am not paid by anyone in any event, right?

And so far, just 10 extra clicks on the FB-link in the thread above (even though this thread has been viewed some 2,000 times today).

I think Michael please do not have a pop at ATEOS ....he has contributed a lot!
Why cant we all click and share? If that is all it takes then why dont people do it ....if that is all it takes to get this progressing a bit then ATEOS is right - just do it please! Of course if you dont use fb then fair enough...but if you do then please click the damned button! thanks

 

[undecided]

Autifony had a dozen trial sites across the UK.

The trial had been going on for, what, 12 months?

Final countdown: 58 TEST SUBJECTS ENROLLED

I believe I have read Autifony had 150+ spots for the trial. Only 58 enrolled!

People don't suffer from this condition... they get used to it...

Not entirely accurate (the bold part).
They had some strict inclusion criteria which prevented lots of potential test subjects to take part in the study. They sort of shot themselves in the foot there.

And by imposing these criteria, they only have a very small and very specific subgroup of test subjects to play around with. Seems a bit short sighted on their behalf.
So, I can't disagree entirely with what you said... I mean seriously, 58 people? Come on.

 

[Silvio Sabo]

I think Michael please do not have a pop at ATEOS ....he has contributed a lot!
Why cant we all click and share? If that is all it takes then why dont people do it ....if that is all it takes to get this progressing a bit then ATEOS is right - just do it please! Of course if you dont use fb then fair enough...but if you do then please click the damned button! thanks

I really don't see what the big fuss is. Just click the damn button! We all like and share a lot of stupid things on Facebook. I come to think of that viral "share this goat for no reason" picture. If people can like/share that one then what is the problem of sharing one post about tinnitus?! I really don't get it!

Yeah you share a post about a disease. So what! I have shared things about ALS, Cancer and just about any disease there is out there. Do I have them all? I sure hope not!

Stop being so hard headed and share the sh** out of that post!!

 

[Stina]

That is sad news given how many people had their hopes on this drug.

However the advancements in medicine have been quite fast and most fields so hopefully ear related issues will catch up as well. I hope the people with loud tinnitus will find a way to cope and not give up hope. I am sure there will be a treatment of some kind in the future

 

[Markku]

Whatever may or may not happen in the future, as founder of Tinnitus Talk and a team member of Team Trobalt, and as a person who has frequently conversed with @attheedgeofscience, I just want to say that most people here have no idea how much time and dedication he has put into driving our cause, basically being a catalyst of many things.

Whenever I think about that, it humbles me, as he has so relentlessly worked on a variety of initiatives both publicly as well as behind the scenes, one of the recent ones of course being the Auris Medical sponsorship.

So I would say with confidence that he does have quite a bit more know-how and experience than the majority here. Myself included.

I honestly think that he has a more than valid point about the social media likes. I have a few other unrelated heath conditions myself, and I think tinnitus takes the cake when it comes to lack of engagement on social media. And it's such a simple act to become a fan, follow, like, and maybe even share. Compared to the thousands of hours of combined work that has been spent behind the scenes by @attheedgeofscience, [USERGROUP=11]@Team Trobalt[/USERGROUP] and the [USERGROUP=4]@Moderators[/USERGROUP].

Thereby, I would invite everyone to like this post of mine to show some gratitude for @attheedgeofscience's, [USERGROUP=11]@Team Trobalt[/USERGROUP]'s and the [USERGROUP=4]@Moderators[/USERGROUP]' efforts.

Finally, I would ask everyone to get back to topic, which here is Autifony's QUIET-1 trial. Let's try and keep this on-topic from now on. It's a long thread as is.

Sincerely,
Markku

 

[swc5150]

So if Corrine felt like a guinea pig during her trail period, just imagine how badly Autifony wants to study her now. After all, it would be one hell of a coincidence if her T only got quiet for the weeks she was on 063!

 

[RaZaH]

Just tell tinnitus to get off at the next stop. Problem solved.

LOL, this is funny stuff indeed.

 

[amandine]

Thereby, I would invite everyone to like this post of mine to show some gratitude for @attheedgeofscience's, @Team Trobalt's and the @Moderators' efforts.

Markku please can you repost the facebook link for people to go and like and share as it is again lost back in the thread. If we can have the link at the top of this page or opening page or somewhere prominent please - i repeated it once but again so many posts it gets lost...I am sure if people saw it bang in their face all the time that it would get clicked...any chance please Markku? thanks

 

[Markku]

Markku please can you repost the facebook link for people to go and like and share as it is again lost back in the thread. If we can have the link at the top of this page or opening page or somewhere prominent please - i repeated it once but again so many posts it gets lost...I am sure if people saw it bang in their face all the time that it would get clicked...any chance please Markku? thanks

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