Frequency Therapeutics — Hearing Loss Regeneration

[Ed209]

Your arguments/positions are just all over the place. Respectfully.

How so?

 

[ThomasRobert]

Sam Wilson looks optimistic...

 

[RingingBrother]

I agree with you that they will eventually figure it out. Henry Ford failed twice before founding Ford Motor Company and being successful. Many people fail before they succeed. There will be a treatment, the question is when.

I see similarities to when the first airplane was invented. A lot of failures were endured at first until it finally worked. The same will happen with FX-322 and every new invention.

 

[GlennS]

Blue Origin I thought was Branson's baby?

Branson has Virgin Galactic.

 

[GlennS]

if you don't try, you'll never find out what is and isn't possible

I agree that more R&D money should be spent but I think people have too much of a romantic and triumphalist Tony Stark notion of the intersection of money and invention. You know, the way Tony Stark just pulls himself up by his bootstraps, hits the woodshed, has this almost religious epiphany and "solves" time-travel in Endgame?



I love it, don't get me wrong. It makes for satisfying storytelling, but it's not how it works. Passion and means aside, technological breakthroughs are very much hit and miss. Some objectives are the realm of sci-fi for very good reasons. That doesn't mean we should not continue to aspire, but please, have realistic expectations.

When I see people say "if only (insert rich person) threw money at the problem we'd have a cure already" all I see is this delusion at work and all it does is make you bitter and angry, like somehow we're all effectively entitled to miracles.

 

[Ed209]

I agree that more R&D money should be spent but I think people have too much of a romantic and triumphalist Tony Stark notion of the intersection of money and invention.

If only it was that easy

When I see people say "if only (insert rich person) threw money at the problem we'd have a cure already" all I see is this delusion at work and all it does is make you bitter and angry, like somehow we're all effectively entitled to miracles.

I agree with this. I've pretty much said this before at some point.

 

[Zugzug]

Re: funding:

I'm really confused by the insinuation that we should laugh at the notion of funding tinnitus and hyperacusis research more. Like sure, funding alone doesn't lead to medical breakthroughs, but it's a very important prerequisite.

Ask yourself this, and obviously this is a totally different medical problem: If COVID-19 wasn't a global pandemic that set the world on fire, would we have a bunch of vaccines being distributed right now? Let's say the global reaction to it was similar to tinnitus and hyperacusis -- that the people dying on ventilators are overprotecting their lungs and hearts and that they needed CBT to just get over it.

Would we, today, be in a position of climbing out of it? Absolutely not.

I am certainly not drawing an apples to apples comparison here, but it's completely dishonest to believe that we are on the verge of maxing out tinnitus and hyperacusis funding and urgency. Yes, there is a point where they do max out and a cure or treatment still takes time.

Also, the same people who are saying that funding will be a magical fix are the people who won't accept scientific incremental change. In short, it's funny to want more research funding, but Will McLean is supposed to sit in his basement, bypass all intermediate scientific steps and jump right out with perfect audiograms.

I'm just so confused. Scientists are laughably underpaid. Consider this: I interned at a consulting firm many years ago. They couldn't be bothered to give me any work so I basically got paid $25 per hour to do nothing. I literally brought books to work to teach myself how to program with no one caring what I was doing.

In contrast, according to payscale, the average chemist gets paid $52,280 per year. We are currently so so far away from this world of rich, elite, over-paid scientists that don't do anything. It's the opposite, actually. It's a bunch of grown-ups kicking and screaming, blaming the wrong people, while they patiently keep working for the betterment of mankind.

 

[RB2014]

Re: funding:

I'm really confused by the insinuation that we should laugh at the notion of funding tinnitus and hyperacusis research more. Like sure, funding alone doesn't lead to medical breakthroughs, but it's a very important prerequisite.

Ask yourself this, and obviously this is a totally different medical problem: If COVID-19 wasn't a global pandemic that set the world on fire, would we have a bunch of vaccines being distributed right now? Let's say the global reaction to it was similar to tinnitus and hyperacusis -- that the people dying on ventilators are overprotecting their lungs and hearts and that they needed CBT to just get over it.

Would we, today, be in a position of climbing out of it? Absolutely not.

I am certainly not drawing an apples to apples comparison here, but it's completely dishonest to believe that we are on the verge of maxing out tinnitus and hyperacusis funding and urgency. Yes, there is a point where they do max out and a cure or treatment still takes time.

Also, the same people who are saying that funding will be a magical fix are the people who won't accept scientific incremental change. In short, it's funny to want more research funding, but Will McLean is supposed to sit in his basement, bypass all intermediate scientific steps and jump right out with perfect audiograms.

I'm just so confused. Scientists are laughably underpaid. Consider this: I interned at a consulting firm many years ago. They couldn't be bothered to give me any work so I basically got paid $25 per hour to do nothing. I literally brought books to work to teach myself how to program with no one caring what I was doing.

In contrast, according to payscale, the average chemist gets paid $52,280 per year. We are currently so so far away from this world of rich, elite, over-paid scientists that don't do anything. It's the opposite, actually. It's a bunch of grown-ups kicking and screaming, blaming the wrong people, while they patiently keep working for the betterment of mankind.

Vaccine development is a long complex process. It usually takes 10 to 15 years. We did it in one. If there was an urgency and the world banded together, we could have something in a year, just like the COVID-19 vaccine we have now.

I disagree with some of the comments... Money makes the world go round. If I had a billion dollars under my management, and I was allowed to spend it, we'd have something in a year. I could run many trials simultaneously. I could hire scientists for $50k a year. I would collaborate with scientists across the world. I could put 20 scientists on each team, run 100 experiments at a time, each looking into every avenue of tinnitus and hearing loss.

I might not have a cure but I'd have something... and it probably wouldn't be FDA approved, but you could come to my house and get it.

 

[Zugzug]

Vaccine development is a long complex process. It usually takes 10 to 15 years. We did it in one. If there was an urgency and the world banded together, we could have something in a year, just like the COVID-19 vaccine we have now.

I disagree with some of the comments... Money makes the world go round. If I had a billion dollars under my management, and I was allowed to spend it, we'd have something in a year. I could run many trials simultaneously. I could hire scientists for $50k a year. I would collaborate with scientists across the world. I could put 20 scientists on each team, run 100 experiments at a time, each looking into every avenue of tinnitus and hearing loss.

I might not have a cure but I'd have something... and it probably wouldn't be FDA approved, but you could come to my house and get it.

I would also add that I'm really confused that we still believe that regenerating the ear is impossible. Like I get that we can't claim we are there yet, but jeeze, there is so much revolutionary science already. What are most of us complaining about? Timeline. Everyone who follows the science knows it will eventually work. What better way to push the timeline up a few years than urgency and funding? I don't get it. It's a problem made for more funding. If we look at the pipeline that I gathered, there are many, many drugs that would greatly benefit from a jolt of energy.

It's not like we are just living in a cave, wishing for a suitcase of money or something.

 

[ajc]

If there was an urgency and the world banded together, we could have something in a year, just like the COVID-19 vaccine we have now.

I think most tinnitus sufferers (outside of this forum where the worst cases meet) would rather have the world band together for effective treatments for things like cancer, Parkinson's disease, Lou Gehrig's disease, Alzheimer's...

My point is that it's naive to think tinnitus would ever be considered urgent in that manner. Good example is Elon Musk, his partner and the mother of his child, Grimes, has tinnitus. She tweeted some years ago how she had to cancel concerts because of her ear issues. Elon has not mentioned tinnitus once on his Twitter account. That's the importance and urgency tinnitus has for the world's richest man.

So what we have left is scraps and the hope that future hearing loss treatments help tinnitus...

 

[Zugzug]

I think most tinnitus sufferers (outside of this forum where the worst cases meet) would rather have the world band together for effective treatments for things like cancer, Parkinson's disease, Lou Gehrig's disease, Alzheimer's...

My point is that it's naive to think tinnitus would ever be considered urgent in that manner. Good example is Elon Musk, his partner and the mother of his child, Grimes, has tinnitus. She tweeted some years ago how she had to cancel concerts because of her ear issues. Elon has not mentioned tinnitus once on his Twitter account. That's the importance and urgency tinnitus has for the world's richest man.

So what we have left is scraps and the hope that future hearing loss treatments help tinnitus...

You make some good points. People are moved by some combination of two things. Numbers and severity. The severity factor is just not understood. It's a flow chart that leads back to depression, as if it's not a separate disease.

The numbers are there, but they are camouflaged by a lot of mild cases. I'll be honest, before getting them, I didn't even know severe tinnitus was a thing and I didn't even know what hyperacusis was at all. I didn't even know that was even possible.

Something is wrong here. There are other rare diseases that we have heard of. The difference is largely dependent on whether we view them as debilitating outright or debilitating from our reaction to them, or whatever the fuck that lose-lose situation means.

 

[FGG]

I think most tinnitus sufferers (outside of this forum where the worst cases meet) would rather have the world band together for effective treatments for things like cancer, Parkinson's disease, Lou Gehrig's disease, Alzheimer's...

My point is that it's naive to think tinnitus would ever be considered urgent in that manner. Good example is Elon Musk, his partner and the mother of his child, Grimes, has tinnitus. She tweeted some years ago how she had to cancel concerts because of her ear issues. Elon has not mentioned tinnitus once on his Twitter account. That's the importance and urgency tinnitus has for the world's richest man.

So what we have left is scraps and the hope that future hearing loss treatments help tinnitus...

Urgency and funding aren't the full picture imo.

The lack of "banding together" is where a lot of research stalls. Someone could be working on something for years before they publish but until that point the individual and lab's research is unknown while they are still playing Hunger Games with research grants.

I think this might be a reason a billionaire with an ambitious single funder unified project could hypothetically get better results (i.e. 1000 scientists working together non competitively) but that's not usually how they donate to research.

Part of the reason the COVID-19 vaccines happened so fast imo was not just the funding, it was that there was immediate collaboration and data sharing.

 

[Ed209]

I'm really confused by the insinuation that we should laugh at the notion of funding tinnitus and hyperacusis research more. Like sure, funding alone doesn't lead to medical breakthroughs, but it's a very important prerequisite.

I would never laugh at the idea of funding tinnitus and/or hyperacusis research. It's the total opposite in my case. I've spent years trying to get more people interested in the idea of funding research, but it's next to impossible. The vast majority are not the slightest bit interested, and this has always surprised me. It's the same with spreading awareness: it's extremely difficult to find anyone who will come forward, and I think the two go hand-in-hand. Better awareness equals a higher chance of receiving money. People need to see more of the ugly side of this condition.

I can see where Glenn is coming from because over the years there have been countless posts of people wishing death, and all kinds of misery, upon billionaires, thinking that that will lead to an immediate cure. The activism from such individuals is almost always non-existent as well. It gets a tad annoying, in my opinion.

Ask yourself this, and obviously this is a totally different medical problem: If COVID-19 wasn't a global pandemic that set the world on fire, would we have a bunch of vaccines being distributed right now? Let's say the global reaction to it was similar to tinnitus and hyperacusis -- that the people dying on ventilators are overprotecting their lungs and hearts and that they needed CBT to just get over it.

There's not enough meaningful awareness for enough people to care. I would love for this to happen to the tinnitus community, but we have to be realistic, we are competing with many other awful conditions that are after the same money. We had a petition last year to try and get more government money, and it was hard work getting those signatures. We finally reached our goal and then the coronavirus hit. We have shit luck all the time.

Also, the same people who are saying that funding will be a magical fix are the people who won't accept scientific incremental change. In short, it's funny to want more research funding, but Will McLean is supposed to sit in his basement, bypass all intermediate scientific steps and jump right out with perfect audiograms.

I've keenly followed the scientific developments within this field for many years, and I've never expected to see big advancements out of nowhere. We all know that science is a slow and tedious process of trial and error. My frustration was with how the management handled everything. I think Frequency Therapeutics need to be held accountable and deserve more criticism. Don't forget that they went public.

I'm just so confused. Scientists are laughably underpaid. Consider this: I interned at a consulting firm many years ago. They couldn't be bothered to give me any work so I basically got paid $25 per hour to do nothing. I literally brought books to work to teach myself how to program with no one caring what I was doing.

This is very true! But it's the way of the world. Do footballers deserve millions for kicking a ball around? It's crazy to think about, but some of the most meaningful and contributing members of society are also some of the most shit upon people out there. In this country, we tend to knight millionaire celebrities who are living the dream, and that's about their only contribution to the world (not in all cases, obviously). Some of the most deserving people go unnoticed whilst doing work that saves lives and helps our civilisation in ways that others would probably never comprehend.

 

[Keith Handy]

You make some good points. People are moved by some combination of two things. Numbers and severity. The severity factor is just not understood. It's a flow chart that leads back to depression, as if it's not a separate disease.

The numbers are there, but they are camouflaged by a lot of mild cases. I'll be honest, before getting them, I didn't even know severe tinnitus was a thing and I didn't even know what hyperacusis was at all. I didn't even know that was even possible.

Something is wrong here. There are other rare diseases that we have heard of. The difference is largely dependent on whether we view them as debilitating outright or debilitating from our reaction to them, or whatever the fuck that lose-lose situation means.

It doesn't help at all that debilitating hearing disorders are imperceptible to anyone but the sufferer. "Invisible illness."

 

[Tezcatlipoca]

I would also add that I'm really confused that we still believe that regenerating the ear is impossible. Like I get that we can't claim we are there yet, but jeeze, there is so much revolutionary science already. What are most of us complaining about? Timeline. Everyone who follows the science knows it will eventually work.

Exactly. It will work, it's been proven to work in a lab, the rest is figuring out dosage and application schedules, reformulation, better delivery, better vehicle. It's all there, they just have to put it together.

 

[Zugzug]

I would never laugh at the idea of funding tinnitus and/or hyperacusis research. It's the total opposite in my case. I've spent years trying to get more people interested in the idea of funding research, but it's next to impossible. The vast majority are not the slightest bit interested, and this has always surprised me. It's the same with spreading awareness: it's extremely difficult to find anyone who will come forward, and I think the two go hand-in-hand. Better awareness equals a higher chance of receiving money. People need to see more of the ugly side of this condition.

I can see where Glenn is coming from because over the years there have been countless posts of people wishing death, and all kinds of misery, upon billionaires, thinking that that will lead to an immediate cure. The activism from such individuals is almost always non-existent as well. It gets a tad annoying, in my opinion.

There's not enough meaningful awareness for enough people to care. I would love for this to happen to the tinnitus community, but we have to be realistic, we are competing with many other awful conditions that are after the same money. We had a petition last year to try and get more government money, and it was hard work getting those signatures. We finally reached our goal and then the coronavirus hit. We have shit luck all the time.

I've keenly followed the scientific developments within this field for many years, and I've never expected to see big advancements out of nowhere. We all know that science is a slow and tedious process of trial and error. My frustration was with how the management handled everything. I think Frequency Therapeutics need to be held accountable and deserve more criticism. Don't forget that they went public.

This is very true! But it's the way of the world. Do footballers deserve millions for kicking a ball around? It's crazy to think about, but some of the most meaningful and contributing members of society are also some of the most shit upon people out there. In this country, we tend to knight millionaire celebrities who are living the dream, and that's about their only contribution to the world (not in all cases, obviously). Some of the most deserving people go unnoticed whilst doing work that saves lives and helps our civilisation in ways that others would probably never comprehend.

I agree with almost everything you've said. I really wish there was a good way to get more funding. I know Tinnitus Talk does a lot. On my end, I wish there was a way to do this beyond virtue signaling. I hate to say this, but characters like Jastreboff and Julian Cowan Hill (whose opinion is cited regarding COVID-19 vaccine tinnitus lmao) could use their voice for so much more. I don't see eye to eye with Joyce Cohen perfectly, but I respect the fight and plain honesty that she shows over the fact that these problems are not psychological, but ear damage.

To me, a big problem is that we are seen as crazy. Someone big and influential needs to insist that we are sufferers researching our own disorders because no one else will.

 

[FGG]

It doesn't help at all that debilitating hearing disorders are imperceptible to anyone but the sufferer. "Invisible illness."

At least I still have eyes to roll when anyone tells me "it can't be that bad" since I "look fine."

 

[GlennS]

I'm really confused by the insinuation that we should laugh at the notion of funding tinnitus and hyperacusis research more.

Who exactly in this thread is laughing at the idea of funding research more?

What we're pushing back on is the idea that if we just unload the Brinks truck that tinnitus will be solved tomorrow. This is magical thinking on the part of those who are suffering so much that they feel they can't wait to see how things pan out and there's kind of looking for someone rich to blame for not snapping his fingers and making it happen yesterday.

 

[GlennS]

Good example is Elon Musk

Yes, Elon Musk, the guy Tony Stark was modeled off of. And look at the progress of things he HAS worked on. For instance, we have a handful of road fatalities that he and Tesla have somehow avoided responsibility for due to autopilot not being ready for prime-time and his mythical fleet of robotaxis still far off his self-stated ETAs. His bulletproof glass on the Cybertruck broke (twice) in his shambolic reveal. Bumpers falling off his cars in the rain, glass shattering due to shearing forces, displays blinking off or blaring music at full volume due to faulty touchscreens. He can't even get the paint shop to paint cars well enough to avoid chronic chipping and scratches on final delivered cars. SpaceX is faring better but at present Starship prototype after Starship prototype is blowing up. All along the way the stock of Tesla goes to the moon because people these days are literally living in fantasyland and they need some place to park their money because interest rates are at zero. But the problems I listed out illustrates the difference between fantasy geniuses and real-life figures who are just as much Trumpian boast and BS as the real thing.

 

[Zugzug]

Who exactly in this thread is laughing at the idea of funding research more?

What we're pushing back on is the idea that if we just unload the Brinks truck that tinnitus will be solved tomorrow. This is magical thinking on the part of those who are suffering so much that they feel they can't wait to see how things pan out and there's kind of looking for someone rich to blame for not snapping his fingers and making it happen yesterday.

Maybe it's the nature of communicating online, but I just find the Tony Stark reference as kind of condescending. I don't think billionaires are victims because we want their money to go towards science.

Here's a sincere question: Between FX-322, OTO-6XX, SPI-1005, OTO-313, OTO-413, PIPE-307, PIPE-505, Retigabine remake, etc., is our position that there wouldn't be pretty serious jumps in timelines in at least some of these if all of the scientists were fed huge loads of money and teamed up together?

I just don't feel guilty about someone giving up money that they wouldn't miss at all. I don't expect the Elon Musk types to solve tinnitus, just help.

 

[Gb3]

Yes, Elon Musk, the guy Tony Stark was modeled off of. And look at the progress of things he HAS worked on. For instance, we have a handful of road fatalities that he and Tesla have somehow avoided responsibility for due to autopilot not being ready for prime-time and his mythical fleet of robotaxis still far off his self-stated ETAs. His bulletproof glass on the Cybertruck broke (twice) in his shambolic reveal. Bumpers falling off his cars in the rain, glass shattering due to shearing forces, displays blinking off or blaring music at full volume due to faulty touchscreens. He can't even get the paint shop to paint cars well enough to avoid chronic chipping and scratches on final delivered cars. SpaceX is faring better but at present Starship prototype after Starship prototype is blowing up. All along the way the stock of Tesla goes to the moon because people these days are literally living in fantasyland and they need some place to park their money because interest rates are at zero. But the problems I listed out illustrates the difference between fantasy geniuses and real-life figures who are just as much Trumpian boast and BS as the real thing.

Geez someone doesn't like Elon.

 

[Diesel]

Bumpers falling off his cars in the rain, glass shattering due to shearing forces, displays blinking off or blaring music at full volume due to faulty touchscreens. He can't even get the paint shop to paint cars well enough to avoid chronic chipping and scratches on final delivered cars.

This sounds like common car industry flaws stuff to me, not Elon Musk / Tesla-specific problems. And honestly, they're not all that bad, all things considered. Anyone remember when a major manufacturer had to recall all of their cars because of floor mats? Or how about ignition cylinders failing, locking the steering wheel, and killing their occupants? Or 3rd brake lights melting causing battery explosions? I've also seen my share of bad paint from the factory... don't get me started on Land Rover.

 

[Paul Walter]

Just to make my point.

I fully understand that currently cutting off the auditory nerve is not an option and in most cases it does not work and can make things far worse.

My point was however there must be a point within the brain where nerves terminate or commence at the primary point.

Many of those with severe debilitating tinnitus would forsake hearing in one or both ears at the chance to get rid of their tinnitus in a heartbeat.

What I am saying is with today's imaging technology tracing full auditory nerves into the relevant brain sections and terminating them at absolute primary end point would be a far more achievable goal scientifically and technologically and in a shorter time frame than finding a full cure for hearing loss and tinnitus.

Not that those goals can't still be pursued.

I believe if money were spent on this type of procedure, it would be achievable and provide relief for those suffering the loudest unbearable cases of tinnitus.

 

[GlennS]

I might not have a cure but I'd have something...

Easier said than done. Really, this is arguing over belief-systems. I'm not going to stop you from thinking money is magic anymore than you'll concede that some challenges are intractable.

As far as vaccines go, the R&D on mRNA goes back decades. It was just put into practice now out of necessity.

My point was however there must be a point within the brain where nerves terminates...

Chopping out parts of your body and rendering yourself deaf isn't really a solution befitting the 21st century, not unless we have high quality bionic implants at least.

 

[Billy_Shears]

Many of those with severe debilitating tinnitus would forsake hearing in one or both ears at the chance to get rid of their tinnitus in a heartbeat.

If you're speaking of both ears being the price to pay, then the self-chosen sounds of silence would wreak one into eventual severe depression with no recourse.

 

[Paul Walter]

It's an option and one that is more probable. A cure for tinnitus and hearing loss is light years away. No one on this forum will ever see or experience it.

 

[tarmaced]

It's an option and one that is more probable. A cure for tinnitus and hearing loss is light years away. No one on this forum will ever see or experience it.

*Hearing loss and tinnitus drugs in trial pipeline*

I am not sure how much closer you can get, there being multiple drugs in the clinical trial pipeline. Multiple Phase 3 trials would be nice to see, I admit.

It's no given, but comments like this (which 20 years ago would have been considered valid by most) speak more about your mindset than reality.

Also for your information, there are people on here who are well under 30... That's many years of potential.

Hope we all feel better soon.

 

[Ed209]

It's an option and one that is more probable. A cure for tinnitus and hearing loss is light years away. No one on this forum will ever see or experience it.

It's not an option, though. How does making people deaf improve the situation? I can't imagine anything worse, to be honest. Severe tinnitus with deafness thrown in is not a good mix at all as you will have removed the only asset that can help one camouflage the noise. Not to mention that you'd never hear your loved ones' voices again or anything else for that matter. I don't think you realise how horrible it can be to lose your hearing.

If you said the opposite, that hearing regeneration could help, then it would make a lot more sense.

 

[r34d1ng]

Frequency Therapeutics Expands its Clinical Development Team, Adding Expertise in Inner Ear Physiology and Translational Science

• Addition of Jeffery T. Lichtenhan, Ph.D., a leading expert in hearing diagnostics and measurement.
• Dr. Lichtenhan's laboratory has aimed to develop novel, clinically relevant measures of auditory dysfunction.
  
• Will help to advance the Company's hearing clinical development programs, including its lead program, FX-322.
• Will develop strategies to turn laboratory and clinical observations into new, increasingly sensitive diagnostic methodologies to support development of new therapeutics for acquired sensorineural hearing loss.
• Frequency continues to build out its hearing research and development efforts, while working to define specific patient populations where its lead treatment candidate, FX-322, may have the greatest impact.

 

[RichieTheKid]

Listen, too many people are being negative since this recent trial failed. I say, so what?

Lack of belief and unity is what will regress us further. I'm not wrong. FGG is right, it's banding together the various hearing research divisions that will lead to a cure. It's also a lack of belief. I notice a trend, the older someone gets or more time passes with a condition like this , they tend to tale a pessimistic or "realistic" view of the future. I don't blame them, to me I see it as a coping mechanism. But I'm here to spit the truth. We failed once and we will will fail again. Be persistent and you will succeed, in one way or the other. Nothing about life is realistic by the way. The phones you use, planes you fly, 200 years ago those would have been considered myth or legend. The very particles that make you up at the subatomic level, they behave weird at a quantum level, we are still baffled by the very science we preach. The I see it we barely know the "why" but more the "how" and "what".

Bottom line, no one knows what's possible and not. But what is true is that a lack of belief is a toxic thing and has no place in a quest for the betterment of humanity. I don't blame people for feeling that way as these conditions are hell. But don't let it give you tunnel vision.