Tinnitus Research Initiative (TRI) 2019 Conference

[Jazzer]

@Hazel
Very best wishes to your ma Hazel,
Take care
Dave x

 

[Starthrower]

Tomorrow @Hazel is traveling to Taipei for the Tinnitus Research Initiative conference! She's going in spite of the fact that her mom suffered a stroke and is currently in the hospital. She didn't want to disappoint any of you by cancelling the trip; that is how much our cause means to her - while obviously she also loves her mom dearly and is deeply concerned (evidence: this week she had to cut short the TIN-ACT meeting in Berlin because of her mom's sudden sickness; she immediately flew to Bath, UK to see her in the hospital, and stayed there for a couple of days taking care of her).

The flight is a whopping 13 hours! The plane is a KLM Boeing 777-300ER with a 3-4-3 configuration. We were able to book her an aisle seat, thankfully.

Good thing is that it's a direct flight, unlike on the way back, which has a layover in Paris - overall that one will be 17 hours.

The conference itself starts on Friday, but we have booked some interviews to take place before that.

Hazel will be interviewing, for example, Winfried Schlee, the scientific coordinator of Tinnitus Research Initiative, and many other interesting tinnitus researchers and clinicians!

We'll keep you posted!

Everyone please wish @Hazel good luck! It has been my utmost pleasure to get to know her and have her involved in our work! I greatly respect her and everything she does.

@Hazel thank you. The traveling sounds so difficult and you are forging ahead for our cause. I am thinking of you and your mom who must realize how special you are. Words are hard to find and I write this as I am out of the door this morning.

Can we donate towards Tinnitus Hub to help cover your expenses? Will have to check in later today.

Again thinking of you.

 

[hans799]

@Hazel you're amazing! I hope you'll find at least a little enjoyment among the health worries and the discomfort of the trip. Wishing all the best to your mom.

 

[glynis]

Good luck @Hazel,
We are lucky to have you.
Take care,
love glynis

 

[TuxedoCat]

Hi Hazel,

Sorry to hear about your mom. I sincerely hope she is on the road to recovery.

And an extra big thank you for making such a long trip, especially at a time like this. Please know that we all appreciate the long hours Markku and yourself put into the tinnitus cause.

Wishing you a safe trip-
TC

 

[Stu1983]

Love and respect for everything you do @Hazel and @Markku, and all the others who grind for the cause.

Sincerely,
Stu

 

[Contrast]

The TRT status quo'ers will be attending the 2019 TRI conference and this time they are going to be spreading outdated views on hyperacusis that can result in serious maltreatments of patients.

Tinnitus Talk's goal could be to ask them if there is a difference between pain and loudness hyperacusis and how in the world sound therapy could manage both?

Research suggests loudness hyperacusis is related to the central gain mechanism in the auditory brain which also can cause tinnitus.

Research suggests pain hyperacusis (noxacusis) is related to cochlear nociception and/or peripheral neuropathy.

https://www.entandaudiologynews.com...iological-mechanisms-of-hyperacusis-an-update

This monopoly in the field can't go on. I personally don't believe it's entirely Dr. Jastreboff's fault TRT is a monopoly in the US. It's because audiologists are just not innovative since they are too focused on selling hearing aids, and hyperacusis is rare, while noxacusis is even rarer. It's just that the field was stagnant due to the conditions being rare and Jastreboff's model went unchallenged for decades.

 

[billie48]

Thank you @Hazel and @Markku for all you do on behalf of all the members and the tinnitus community at large. Your dedication is admirable. It must be very hard for Hazel to leave her mom while she suffered a stroke. Hope she will recover gradually and be well.

 

[Milky Way]

Heartfelt gratitude to you Hazel! May you travel safely and your mom swiftly recover.

 

[Codaz]

Research suggests loudness hyperacusis is related to the central gain mechanism in the auditory brain which also can cause tinnitus.

Research suggests pain hyperacusis (noxacusis) is related to cochlear nociception and/or peripheral neuropathy.

https://www.entandaudiologynews.com...iological-mechanisms-of-hyperacusis-an-update

This monopoly in the field can't go on. I personally don't believe it's entirely Dr. Jastreboff's fault TRT is a monopoly in the US. It's because audiologists are just not innovative since they are too focused on selling hearing aids, and hyperacusis is rare, while noxacusis is even rarer. It's just that the field was stagnant due to the conditions being rare and Jastreboff's model went unchallenged for

Well IMO the hearing field is less dominant than the research field. But Jastreboff's model needs a big update.
Simply saying that more stress is more tinnitus does not count anymore.

Good luck @Hazel and best to your mom. There is a big interview with Dirk de Ridder in this weekend's Dutch newspaper Trouw were he also mentions Winfried Schlee.

https://www.trouw.nl/home/bij-oorsuizen-is-de-piep-het-signaal-van-een-schattend-brein~aa1074cf/

 

[Hayls32]

Hazel, wishing your mum a speedy recovery and good health. Thank you for all of your hard work. xx

 

[Cape crusader]

Good luck and be safe. Thanks for trying to help us.

 

[JohnFox]

Great to hear you'll be there Hazel. Like you, I also have one sided hearing loss with no known origin. My hearing loss was sudden and complete, on right side with tinnitus and hyperacusis, so I am looking forward to seeing what you report following this trip.

Godspeed!!

 

[Martin69]

@Hazel
Looking forward to your report.

From Germany, Prof. Langguth is also there (as a speaker). He is the one who was mentioned by Neuromod when talking about collaboration with Germany. Hence, I assume that he will tell something about it.
Susan Shore is also there as a speaker. Would be good to get the latest news.

I am also in contact with someone from Regensburg (where Prof. Langguth) is located. If I get anything from there, I will let you know.

Take care.

 

[Markku]

The TRI conference starts tomorrow on Friday, but ahead of that there's already today an ESIT (European School for Interdisciplinary Tinnitus Research) satellite event, where @Hazel gave a presentation on public outreach.

 

[Starthrower]

Thank you @Hazel, this is awesome and you are so pretty!! In all my years involved with tinnitus organizations and in different arenas this is by far the most professional representation of our online community that has been ignored.

This traveling and time you give are beyond what I can express with gratitude.

Hope your mother is doing okay.

Many hugs...

 

[Markku]

@Hazel's second day at the TRI conference in Taipei!

On the way to the conference arena, Hazel came across this. We don't tend to see these kinds of eight-legged monsters back home. Hazel was unfazed - I would have screamed like a little baby and ran away.

Welcome to the conference.

Today consisted of recording interviews (on video) with almost a dozen tinnitus researchers.

I want to highlight how much time and effort this takes. To arrange the interviews, plan for them, hire a professional video person, the actual day of shooting, the work that ensues after that, editing, publishing. We are talking hundreds of hours of work.

Overall, the second day was a success. We are looking forward to bringing you interviews and lay-friendly summaries of what we thought were the most interesting talks/sessions and which Hazel was able to attend besides organizing the interviews. We also were able to ask some awesome ESIT/TIN-ACT PhD students to help us with attending some of the sessions and forming summaries.

Now, as I'm writing this, it's evening in Taipei and Hazel is currently attending the networking dinner.
Hopefully we continue to make some new valuable connections!

 

[Agrajag364]

@Hazel's second day at the TRI conference in Taipei!

On the way to the conference arena, Hazel came across this. We don't tend to see these kinds of eight-legged monsters back home. Hazel was unfazed - I would have screamed like a little baby and ran away.

View attachment 29683

Welcome to the conference.

View attachment 29680


Today consisted of recording interviews (on video) with almost a dozen tinnitus researchers.

I want to highlight how much time and effort this takes. To arrange the interviews, plan for them, hire a professional video person, the actual day of shooting, the work that ensues after that, editing, publishing. We are talking hundreds of hours of work.

View attachment 29684


Overall, the second day was a success. We are looking forward to bringing you interviews and lay-friendly summaries of what we thought were the most interesting talks/sessions and which Hazel was able to attend besides organizing the interviews. We also were able to ask some awesome ESIT/TIN-ACT PhD students to help us with attending some of the sessions and forming summaries.

View attachment 29686


Now, as I'm writing this, it's evening in Taipei and Hazel is currently attending the networking dinner.
Hopefully we continue to make some new valuable connections!

View attachment 29688

View attachment 29687

Hazel is AWESOME.

If I saw that spider I would have run screaming too.

 

[SergioN]

Thanks a ton @Hazel!

 

[Starthrower]

Excellent @Hazel!!

Were you able to connect with Dr. Billy Martin yet? If you get the opportunity please tell him Bob and Jen in California want to say hello!

I cannot believe how much time and money is going into this.

I hope everyone understands how dedicated you and @Markku are!!

 

[erik]

Wow I am impressed! Nice job @Hazel

 

[Codaz]

@Hazel's second day at the TRI conference in Taipei!

On the way to the conference arena, Hazel came across this. We don't tend to see these kinds of eight-legged monsters back home. Hazel was unfazed - I would have screamed like a little baby and ran away.

View attachment 29683

Welcome to the conference.

View attachment 29680


Today consisted of recording interviews (on video) with almost a dozen tinnitus researchers.

I want to highlight how much time and effort this takes. To arrange the interviews, plan for them, hire a professional video person, the actual day of shooting, the work that ensues after that, editing, publishing. We are talking hundreds of hours of work.

View attachment 29684


Overall, the second day was a success. We are looking forward to bringing you interviews and lay-friendly summaries of what we thought were the most interesting talks/sessions and which Hazel was able to attend besides organizing the interviews. We also were able to ask some awesome ESIT/TIN-ACT PhD students to help us with attending some of the sessions and forming summaries.

View attachment 29686


Now, as I'm writing this, it's evening in Taipei and Hazel is currently attending the networking dinner.
Hopefully we continue to make some new valuable connections!

View attachment 29688

View attachment 29687

That is professor Dirk de Ridder on the last picture. I hope @Hazel interviewed him or will do so later.

 

[ageoflove]

@Hazel best wishes! And I hope a fast and complete recovery to your mother!

I hope/wish there was some news concerning tinnitus research...

Looking forward to hearing more about the conference.

 

[Martin69]

@Hazel
Do you have any further information from the conference?
Anything about Lenire or other developments?

Thanks and best regards.

@Markku

 

[Ken219]

@Hazel best wishes! And I hope a fast and complete recovery to your mother!

I hope/wish there was some news concerning tinnitus research...

Looking forward to hearing more about the conference.

Just keep donating to the cause!

 

[Jiri]

Thanks heaps @Hazel for travelling all the way to TRI Taiwan to help keep us up-to-date with current tinnitus research. It is much appreciated

 

[Martin69]

Would be good to get some news from the conference.

@Markku @Hazel

Had an eMail exchange with someone who was there.

The statement was:

"Many research projects, but no breakthrough on the horizon seen for curing tinnitus".

Regarding availability of Lenire, it seems it will take some more time (she was even talking about years). I hope this won't be true and is just a personal assumption.

 

[Allan1967]

Would be good to get some news from the conference.

@Markku @Hazel

Had an eMail exchange with someone who was there.

The statement was:

"Many research projects, but no breakthrough on the horizon seen for curing tinnitus".

Regarding availability of Lenire, it seems it will take some more time (she was even talking about years). I hope this won't be true and is just a personal assumption.

Well that sucks, but who knows.

In terms of Lenire availability... what does that mean exactly? Not available in the USA or something? Surely it'll be available in Ireland?

 

[Hazel]

"Many research projects, but no breakthrough on the horizon seen for curing tinnitus".

Well, yes that is a correct assessment, but also rather black and white. I prefer to think in shades of grey. If there was a big breakthrough we'd all be celebrating now. But just because there isn't one yet doesn't mean these conferences are pointless. The TRI conference might well turn out to be the very thing that leads to the breakthrough, because such events facilitate collaboration and knowledge-sharing between many different disciplines and geographies, which is much needed if we're ever going to find the cure. So while I understand your disappointment, I'm quite a bit more optimistic about the event than your acquaintance.

Would be good to get some news from the conference.

We are working very hard on this, but please do keep in mind that we're just a very small group of volunteers and we have other things going on in our lives. In this case, the task is entirely on me, since I was alone at the conference, and I am also dealing with a sick mother at the moment.

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

 

[Daniel Lion]

Wow. Hazel...

Thank you for your hard work... and you look strong, pretty, and great.

Take your time... take care of your mom.

Thank you so much for helping us...

Thank you Markku and all the people behind the scenes.

Massive gratitude.

Daniel