Tinnitus Research Initiative (TRI) 2019 Conference

[Martin69]

@Hazel

No worries. Please care for your mother. This is much more important at the moment.

The rest can wait.

Take care.

 

[Hazel]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

 

[dayma]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

Great work Hazel!

 

[Jiri]

I finally managed to write a blog post about the conference, please check it here!

Whoa, was looking forward to this Thanks! Will check it out for sure.

 

[Starthrower]

@Hazel you are a true professional!!

Excellent recap.

I often look up facts for Matteo de Nora wondering who he is and thank him for donating twenty million for the creation of TRI.

From your blog:

"The TRI was founded with money donated by philanthropist Matteo de Nora"

 

[Jcb]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

Love this Hazel, thank you very much, you are a star As always you come through with the goods and look forward to the interviews as well.

 

[Hazel]

I often look up facts for Matteo de Nora wondering who he is and thank him for donating twenty million for the creation of TRI.

From your blog:

"The TRI was founded with money donated by philanthropist Matteo de Nora"

He's a bit of an enigma! We'll try to get him on our podcast

 

[Starthrower]

We'll try to get him on our podcast

Wow! That would be amazing.

 

[Manny]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

Just read the post. Well written, and great work. Thank you!

 

[GSC]

Loved your blog post. Interesting to note that there's hardly any investors there.

 

[Alberte]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

Thank you very much for the good work!

Alberte

 

[Paulmanlike]

A cure is realistic over the next few decades! I hope it comes sooner than that, but I can't see it coming in 5 years. I think what the high bet people are relying on are the regenerative therapies from Otonomy, Frequency Therapeutics, Decibel Therapeutics. And as some of you know tinnitus is incredibly heterogeneous that originates in different parts of the brain and there's no known exact mechanism for subjective tinnitus, only theories (so far).

It's also possible that the regeneration therapies won't work so we may never know if it would wipe tinnitus out.

IMO I don't think they will find a cure until they find the exact mechanism of tinnitus, and then it will further complicate things if it's still different for each sub-group or just individuals in general. And even if and when that's discovered, it will be another decade before a drug is developed to fix that mechanism.

As for the investor part, I don't blame anybody wanting to steer clear from a tinnitus cure. If you had money to invest, there are much better/safer ways. There is high risk and unacceptable risk and so far, I would put tinnitus cures in an unacceptable risk category.

If only the millions of tinnitus sufferers donated to research regularly it would be a game changer, but many of them like to rely on "can't somebody else do it."

Now for some positivity, I think treatments will continue to grow over the years (not cures) whether it be through bimodal neuromodulation or improved technologies that will help to divert awareness away from the condition.

 

[EDDTEKK]

It is so sad to see how little research is funded and actually ongoing. Of course, there are more papers than 10-20 years ago but it is not always the quantity which makes the difference. As long they can't measure and see tinnitus objectively, there will be no understanding of it. Any potential success will be a coincidence.

The current existing physicians, whatever special field they come from, and the current technical equipment and technologies will not detect the underlying mechanism of tinnitus.

Perhaps in 30 years there will be new medical fields with new denomination of physicians with new technologies. Then... they might better understand this complex sensation.

I even highly doubt that current regenerative research will help us tinnitus sufferers. This will not work - it sounds too easy.

There should be more Matteo de Noras in the world, who can advance the development and understanding of tinnitus.

So many very rich people like entrepreneurs, musicians, actors or politicians are on the same boat I assume.

Why nobody of these men and women supports the TRI or another medical company?

How can we excite, even find, these people to help fund and donate money for a good purpose? Facebook - Instagram - Twitter - YouTube - LinkedIn - ...?

We have to create some campaigns to find more Matteo de Noras.

I just read the article written by @Hazel on the Tinnitus Hub blog, where it stated that Matteo de Nora donated around 20 million dollars. Sounds quite a lot, but even this figure seems much too little unfortunately.

 

[Martin69]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

Great work. Thank you.

 

[Starthrower]

I remember back in the day when Matteo de Nora donated the twenty million euros to establish the TRI organization.

Here in the USA I remember remarks made by support board "experts" once involved with the ATA. Instead of being excited about this new organization critical remarks were made. I don't remember now. This was before Tinnitus Hub. And it hurt my soul.

 

[Watasha]

@Hazel

Were you or the Ph.D. students able to catch up/listen to Dr. Rauschecker's presentation?

 

[Hazel]

Were you or the Ph.D. students able to catch up/listen to Dr. Rauschecker's presentation?

I wasn't there personally, I only attended one or two talks, because I was too busy conducting interviews. I so wished I could have cloned myself Next year in Vancouver, we plan to be there with a whole team of volunteers!

I've not had a chance to go through the reports submitted by the ESIT students yet, so I don't know whether they caught his talk or not. These reports will likely form my follow-up blog post, which I hope to pusblish in a week or so.

We did however conduct a video interview with Dr. Rauschecker, so that one is coming up for sure!

 

[Melody052008]

Hi all! @Martin69, @Daniel Lion, @Allan1967, @Jiri, @Codaz, @erik, @Starthrower and anyone else interested...

I finally managed to write a blog post about the conference, please check it here!

Would love to hear your responses and questions!

Thanks for attending the conference Hazel. Your and Markku's work is much appreciated.

This has been an on-going debilitating pain for me.

I've been suffering from Ménière's for the last few years, severe vertigo spells and this tinnitus. I got a shunt to help drain fluid, that lasted about 4-6 months. Severe spells came back again at work, just awful. This time had to have another surgery, Vestibular Nerve Section. What a journey.

Now trying different meds on me, dealing with awful tinnitus, the tones and pitch changes constantly! I had to get hearing aids. I go in and she adjusts them for me, by the time I get home, everything just changes. Maskers don't really work.

I love my family and if it wasn't for them, I don't know. I had to sell everything I loved, my horses and my Harley. My balance has never been 100% since surgery and of course I had to do what was best for my horses and for me.

I always pray researchers figure it out but all I hear is, they just don't know what causes it.

I sleep at night and sometimes it flares up!! Omgosh!! There is nothing to stop it! I asked my audiologist once, can't I just shove a pen or something in and we get rid of the hearing drum, she was like no! Do not do that, yep, that is how bad the sounds are. And the vertigo spells, they are so unpredictable.

 

[Chriscom]

I solemnly swear that you'll get to hear plenty about the conference, but please try to be patient! It's a lot of work to put together a good conference report and I'm juggling many different things at the moment. Sorry if this seems like a rant

Thank you for all the work you do on a volunteer basis, it boggles my mind. I'm a new member and will donate on Tuesday, my next paycheck.

 

[FGG]

Thanks for attending the conference Hazel. Your and Markku's work is much appreciated.

This has been an on-going debilitating pain for me.

I've been suffering from Ménière's for the last few years, severe vertigo spells and this tinnitus. I got a shunt to help drain fluid, that lasted about 4-6 months. Severe spells came back again at work, just awful. This time had to have another surgery, Vestibular Nerve Section. What a journey.

Now trying different meds on me, dealing with awful tinnitus, the tones and pitch changes constantly! I had to get hearing aids. I go in and she adjusts them for me, by the time I get home, everything just changes. Maskers don't really work.

I love my family and if it wasn't for them, I don't know. I had to sell everything I loved, my horses and my Harley. My balance has never been 100% since surgery and of course I had to do what was best for my horses and for me.

I always pray researchers figure it out but all I hear is, they just don't know what causes it.

I sleep at night and sometimes it flares up!! Omgosh!! There is nothing to stop it! I asked my audiologist once, can't I just shove a pen or something in and we get rid of the hearing drum, she was like no! Do not do that, yep, that is how bad the sounds are. And the vertigo spells, they are so unpredictable.

Anti-virals help a lot of people with Meniere's. Unfortunately, I'm not one of them. Look up Dr. Gacek's research. Could be worth a try.

 

[PhyllisC]

Thanks for the blog post, Hazel. It's good to know your take-aways and to be informed about what's going on in the field of research around tinnitus.

While reading your post, it occurred to me that tinnitus is very much like pain, in that objective measurements are elusive, and it's a symptom, not a disease in itself. As an off-topic, my thoughts go immediately to functional impairments as a result of tinnitus. I'm hopeful that we also start to measure the impacts of tinnitus of function, be it as a worker, a parent, a partner, or another community role, as a way to interest investors in funding the research. This has helped the medical and public health communities start to take pain more seriously, and I think it will help tinnitus sufferers, too.

 

[JohnAdams]

I'm hopeful that we also start to measure the impacts of tinnitus of function, be it as a worker, a parent, a partner, or another community role, as a way to interest investors in funding the research.

Do we really need any more proof that it is a living nightmare?

 

[Daniel Lion]

I wasn't there personally, I only attended one or two talks, because I was too busy conducting interviews. I so wished I could have cloned myself Next year in Vancouver, we plan to be there with a whole team of volunteers!

I've not had a chance to go through the reports submitted by the ESIT students yet, so I don't know whether they caught his talk or not. These reports will likely form my follow-up blog post, which I hope to pusblish in a week or so.

We did however conduct a video interview with Dr. Rauschecker, so that one is coming up for sure!

We need more clones of you Hazel, this world would be such a better place. If you are cloned in mass production I promise I will be super nice and protective of you.

 

[Hazel]

Hey there,

I've finally been able to make some time to compile a more in-depth report of the conference.

You can read it here.

With major thanks to the group of tinnitus PhD students whom I recruited as my 'roving reporters.' This was needed since I didn't have time to attend more than a handful of talks myself; I was too busy doing video interviews.

Those video interviews, btw, are coming up real soon too! We interviewed Susan Shore, Dirk de Ridder, Arnaud Norena, and many more!

If you like our efforts to report on research, please do share on social media!

 

[Hazel]

Hi there, here is the first of our TRI video series! For those who have read my blog posts - here and here - the video doesn't contain anything new per se, since it's just a general impression of the conference, but perhaps it does add a visual element.

Looking back at myself featured in the video I can't help but feel I was being overly positive; perhaps it was just the excitement of being there. I definitely also had some criticisms on the conference, as my first blog post indicated - in particular when it comes to the absence of industry. Still, the conference is, I believe, an important - perhaps even crucial - element to progressing with tinnitus research. Without such events, each researcher will just keep working in their own little niche, and we're missing the bigger picture.

Anyway, happy to hear what you think of the video, but please be kind! I'm critical enough of myself as is

The editing was done by our own tech wizard @Markku, as usual. This time he was joined by up-and-coming editor and design star @Autumnly. She is truly putting her talent to great use for the community, so please thank her!

If you look at the top of this thread, you will now find two tabs: Discussion and Updates & Videos. The latter will feature static content only posted by us. This will make it easier to see the complete overview of everything we've published about TRI 2019 so far, and there's a lot more coming!

Stay tuned for our upcoming videos: We will publish in a few days a mini-panel discussion featuring three researchers, and then at least a dozen individual interviews!

 

[Hazel]

Aaaaand, here's the next video! It's a mini-panel discussion of about ten minutes between three of the TRI staff members.

Winny, Raj and Berthold are great proponents of involving patients more closely in research, and this is one of the topics they talk about in this video. A big thank you to them for their outreach efforts!

For the hardcore research enthusiasts probably not much news, but I think it's awesome for the average tinnitus patient out there to get a quick taste of tinnitus research.

As I said before, the more focussed interviews covering specific research topics are still coming, so stay tuned.

In the meantime... If you like our efforts to report on research, please do share on social media!

 

[Zuben]

Do we really need any more proof that it is a living nightmare?

Yes actually. Demonstrating real socioeconomic effects of the condition through data, as opposed to anecdotal evidence, may help secure funding and support.

 

[Hazel]

Here is the first of the individual interviews we conducted in Taipei, many more to follow. We figured many of you will have a particular interest in hearing from Susan Shore, so here she is!

Tens if not hundreds of hours of editing have gone into this, mostly by our wonderful @Autumnly, so please give her a big thank you. The designs/graphics are done by her as well; she has a real knack for this!

Please let us know what you think, what you'd like to see in future, and of course whether you want to help out with video projects like this.

And if you appreciate our work, do consider donating HERE; we're all doing this in our free time and partly from our own pockets.

FYI, Susan Shore consented to this interview by exception; she told me that she gets many interview requests and many emails from patients, but she wants/needs to spend her time now on the clinical trial that she and her team are conducting. Once that's done (mid-2020?) she consented to doing a full podcast interview with us.

Hope to hear from you all.

Cheers,
Hazel

 

[Frédéric]

Big thank you @Autumnly.

 

[Daniel Lion]

Tens if not hundreds of hours of editing have gone into this, mostly by our wonderful @Autumnly, so please give her a big thank you. The designs/graphics are done by her as well; she has a real knack for this!

Thank you Autumnly.