Ideas and Suggestions for Future Episodes

[Tanni]

Sorry to keep popping up here with suggestions, but I actually think a kind of round table talk with some of the regular Tinnitus Talk members would be a very interesting podcast, and could garner a lot of listens.

I seem to remember the 'My Posting Place' thread has been mentioned outside of this forum, so it seems people are interested in what a lot of our more outspoken members have to say.

I'm not suggesting it should be an 'informative' podcast necessarily, but it might be interesting for people to hear of different member's experiences dealing with tinnitus, and knowing some of our members, I think it could end up being quite an amusing listen

 

[Jazzer]

How do you get people whose tinnitus is no issue to them to understand the full extent of tinnitus and how debilitating it can get.

Easy answer to this one.

You make a video - and you tell the truth!

 

[TeslaGuy]

I really liked the first two podcasts! Is the next still coming this month?

 

[Redknight]

Who would be your ideal interviewee for this topic? Give a few names if you will.

Frequency Therapeutics
http://www.frequencytx.com/

 

[Hazel]

I really liked the first two podcasts! Is the next still coming this month?

Thanks! We're struggling a little bit, having recorded bits and pieces for various episodes, but need to decide which to publish and then edit it together. Stay tuned!

 

[TimmyC]

Thanks! We're struggling a little bit, having recorded bits and pieces for various episodes, but need to decide which to publish and then edit it together. Stay tuned!

First off, I am truly thankful for your work as well as @Jack Straw and @Markku. The podcast is so well done, and really is a pleasure to listen to.

Given the triumph we had over at STAT, I wonder if you guys have already recorded the Richard Tyler episode? Given the technology relationship, maybe that one would be a good one to put out. Also, I stay off of Tinnitus Talk (usually to keep my brain off of the tinnitus) but I am willing to help out in someway, as I am a digital tech student (I work with social media, as well as audio/video/design/website work) and would be more than willing to volunteer my time to help. PM if there's a way I can.

 

[Deamon22]

@Markku @Jack Straw @Hazel Why not record a really relaxed episode between the three of you (or also other people who work behind the scenes) and just talk a bit about yourselves, what are the challenges of managing such a big community, giving people a glimpse into all the work that goes on behind each podcast, video and everything else you guys do.

Surely would be interesting and maybe also a way to motivate people to get involved

 

[Jack Straw]

@Markku @Jack Straw @Hazel Why not record a really relaxed episode between the three of you (or also other people who work behind the scenes) and just talk a bit about yourselves, what are the challenges of managing such a big community, giving people a glimpse into all the work that goes on behind each podcast, video and everything else you guys do.

Surely would be interesting and maybe also a way to motivate people to get involved

This may not be the best idea. Once I start rambling it may be hard to stop me! Lol

 

[Hazel]

Hey all, we got our first podcast benefactor through Patreon! This is really exciting for us, as it will make it so much easier to continue the podcast and make it even better

The benefactor prefers to remain anonymous, but we can tell you that he/she has been amazingly generous by opting for one of the highest donations tiers of 25 dollars per month. But please know that you can support us for as little as 2 dollars per month!

More information here.

 

[TibuJenkins]

I searched this thread to see if it had been suggested, but how about inviting Dr. Thanos Tzounopoulos? He seems to be the outside long shot in terms of developing the mythical tinnitus magic pill and seems to be picking up steam with his latest grant from the Department of Defense.

I imagine that getting him to do the podcast might be difficult given how little free time researchers/endowed professors must have. But his insights would probably make for a great episode.

 

[Markku]

I searched this thread to see if it had been suggested, but how about inviting Dr. Thanos Tzounopoulos? He seems to be the outside long shot in terms of developing the mythical tinnitus magic pill and seems to be picking up steam with his latest grant from the Department of Defense.

I imagine that getting him to do the podcast might be difficult given how little free time researchers/endowed professors must have. But his insights would probably make for a great episode.

Great suggestion! He's absolutely of interest to many who follow tinnitus research.

Prof. Tzounopoulos has now happily agreed to an interview. We already have a few interviews pending publication so I estimate this one will be out in the next 2-3 months.

 

[TibuJenkins]

Great suggestion! He's absolutely of interest to many who follow tinnitus research.

Prof. Tzounopoulos has now happily agreed to an interview. We already have a few interviews pending publication so I estimate this one will be out in the next 2-3 months.

Wow! Markku you have no idea how immensely happy this makes me. Thank you!

 

[Lucifer]

Would it be possible to invite Frequency Therapeutics to a podcast/video interview?

@Markku @Hazel

 

[Jack Straw]

Would it be possible to invite Frequency Therapeutics to a podcast/video interview?

@Markku @Hazel

We have already invited Frequency Therapeutics on the podcast, but they never got back to us. We may try reaching out again in the future.

 

[Lucifer]

We have already invited Frequency Therapeutics on the podcast, but they never got back to us. We may try reaching out again in the future.

Might also be able to ask REGAIN for a podcast/video interview as well.

 

[Jack Straw]

Might also be able to ask REGAIN for a podcast/video interview as well.

I have never heard of REGAIN. What do they do?

 

[Lucifer]

I have never heard of REGAIN. What do they do?

REGAIN/Audion Therapeutics are doing something similar to Frequency Therapeutics where they are trying to restore hearing loss which could lead to a cure in tinnitus and hyperacusis. They are currently in Phase 2 which should be done by the end of the year with results published by January 2020.

http://www.audiontherapeutics.com

https://www.regainyourhearing.eu

 

[urgentresearch]

I would love to hear an interview with Timothy Balmer RE: his ongoing Unipolar Brush Cells (UBCs) research.

 

[Ryan Parker]

Hi everyone.

Just discovered the Podcast recently and have listened to the first two episodes. Thank you for drawing attention to this issue.

As a suggestion for future episodes, I would love to see one that focuses on Meniere's Disease, which is something I've been unlucky enough to have in my life the last 6 years. Meniere's is an idiopathic, chronic condition which has many difficult symptoms, but the tinnitus it brings has quickly become the one I struggle with the most.

If you ever decide to cover this and would like to talk to someone who lives with it daily, please don't hesitate to reach out.

Thank you again and I look forward to future episodes.

 

[Watasha]

I'd be interesting in hearing from new CEO Timothy Higdon (or a proxy) from Hearing Health Foundation on what their foundation does, Operation Regrow, and how they are involved in tinnitus research.

 

[TuxedoCat]

It occurs to me that many of the podcasts will feature researchers or organizations on the Worthy Causes list.

In fact, when I was writing up the summaries for Worthy Causes, I was put in touch with a Director of Development at Mass Eye and Ear. She offered to give a virtual tour and to have some of the scientists talk about their work. I'll pass that person's name onto Hazel and perhaps it could be a podcast or something different with visuals. Honestly, I'm really curious to learn what goes on in the Lauer Tinnitus Research Center. Outside of Dr. Liberman's work on hyperacusis, I've never heard of anything that's come from there. The Lauer Center is one of the Peabody Labs that received a huge anonymous gift a couple of years ago and that just peaks my curiosity!

TC

 

[pilgrim]

I would like a podcast episode on natural remedies.

My tinnitus got progressively worse at 50 and I also have deafness (right ear).
I began yoga at 50 as my sense of balance was really affected. I also needed to inhabit my body instead of "running away" (seriously not possible with tinnitus).

Yoga is helping me to "be" inside my body in ways I have never imagined possible. It is good medicine.
I don't talk about tinnitus with other people (draw attention to it etc) unless I am having a particularly hard day, but I do believe it is necessary to somehow "befriend" this presence.

Yoga is a means to do this and there are other meditative and grounding practices that help.

Can we hear more about this please?

My avatar shows a statue on the Camino de Santiago de Compostela (walking for long periods of time helps!).

Moving the body... grounding with the earth... to forge some alternate pathways to the brain that are not "stress" related.

I have tried so many things... natural remedies like Turmeric, sound therapy, hearing aids, Zinc chelate, Magnesium.

Have these helped?

Well, not that I can tell as... the tinnitus is still LOUD -- and some days far worse than others.

It gives me some inner strength, however... to keep on going.

Emotional resolve.

 

[Hazel]

REGAIN/Audion Therapeutics are doing something similar to Frequency Therapeutics where they are trying to restore hearing loss which could lead to a cure in tinnitus and hyperacusis. They are currently in Phase 2 which should be done by the end of the year with results published by January 2020.

Cool, I'll put them on our list to reach out to.

I would love to hear an interview with Timothy Balmer RE: his ongoing Unipolar Brush Cells (UBCs) research.

Will reach out to him!

As a suggestion for future episodes, I would love to see one that focuses on Meniere's Disease, which is something I've been unlucky enough to have in my life the last 6 years. Meniere's is an idiopathic, chronic condition which has many difficult symptoms, but the tinnitus it brings has quickly become the one I struggle with the most.

If you ever decide to cover this and would like to talk to someone who lives with it daily, please don't hesitate to reach out.

Thanks, Ryan! We absolutely should do a dedicated episode. Thanks for offering to take part as well

I'd be interesting in hearing from new CEO Timothy Higdon (or a proxy) from Hearing Health Foundation on what their foundation does, Operation Regrow, and how they are involved in tinnitus research.

They already consented to be on our podcast, although nothing specific scheduled yet, and I don't know whether it will be with the CEO or someone else.

I would like podcasts on natural remedies.

My tinnitus got progressively worse at 50 and I also have deafness (right ear).
I began yoga at 50 as my sense of balance was really affected. I also needed to inhabit my body instead of "running away" (seriously not possible with t)

Yoga is helping me to "be" inside my body in ways I have never imagined possible. It is good medicine.
I don't talk about tinnitus with other people (draw attention to it etc) unless I am having a particularly hard day, but I do believe it is necessary to somehow "befriend" this presence.

Yoga is a means to do this and there are other meditative and grounding practices that help.
Can we hear more about this please?

Good idea regarding natural remedies, since so many people try these but there's no hard scientific evidence (as far as I know) that they work.

I'm a big yoga fan myself (already was before tinnitus) and it has definitely helped me cope too. Perhaps worth exploring in a future episode as well.

So many ideas and too little time! I promise to follow up on all of the above, but we already have quite a few episodes in the pipeline, so it will take time.

 

[Watasha]

Another potential podcast could be with Shaowen Bao, PhD and neurophysiological researcher at University of Arizona. He heads the team regarding the recent neuroinflammation reducing pill that alleviated tinnitus in mice.

This might be better pushed out to give the team more time to establish more clarity on the state of their clinical trial, etc.

 

[urgentresearch]

Another potential podcast could be with Shaowen Bao, PhD and neurophysiological researcher at University of Arizona. He heads the team regarding the recent neuroinflammation reducing pill that alleviated tinnitus in mice.

This might be better pushed out to give the team more time to establish more clarity on the state of their clinical trial, etc.

Great idea.

 

[Autumnly]

Someone from the Texas Biomedical Device Center and/or MicroTransponder / SerenitySystem.

 

[gerhei]

Hello,

I have two suggestions:

1) Interview with the responsible researchers at the DZM Heidelberg for Music Therapy regarding the therapy in general as well as the results of the past 5 years that solidified the effectiveness of the therapy for tinnitus patients (since I live close to the city I could help out with reaching the persons if it is necessary).

2) An episode on the systematization of various kinds of tinnitus and the necessity to develop various treatments for various kinds of tinnitus. (Especially the question of whether the heterogeneity of tinnitus may bias the studies conducted when the patients are not prescreened for their kind of tinnitus. Cures or therapies that could be useful for a special subgroup of patients, e.g. those with somatosensory tinnitus, may not be useful to other patients but are dismissed because the results are averaged).

Best regards.

 

[Daniel Lion]

Hello,

Perhaps Stefan Heller from Stanford? He's pioneering and actually responded to an email I sent him, he's approachable and wants to help.

Oooops... forgot to say thanks.
Thank you for your hard work folks.

 

[Mister Muso]

I have never heard of REGAIN. What do they do?

Not the same REGAIN that claims you can re-grow lost hair on your head?

Tried it - didn't work.

 

[Paulmanlike]

We need a Q&A with Otonomy on their products in development, specifically to ask about their OTO-313 drug and how is it different to Auris Medical's. Also, is OTO-313 aimed at short or chronic tinnitus. We should also inquire about their other products in the pipeline.

Otonomy are stubbornly difficult to get hold of.