Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
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Where I'm based at I think if I was referred to an ENT specialist at a public hospital and they had FX-322 available it would be free. If private then will need to pay but not too sure about the cost.
@mrbrightside614
My outer hear cells had as the audiologists and doctors state experienced minor damage. However, my hearing as tested twice is excellent. I have better understanding after reading your post. I certainly hope FX-322 regenerates both OHC and IHC. My concern is how can they match the exact frequency of the damaged hair cells that interact with the brain? I wish these discoveries were under the fast track program (SBIR). This program gets inventions / discoveries IND etc., to commercialization much quicker than the long drawn out clinical trial process with peer reviews etc. I used to work for the NIH.
My outer hear cells had as the audiologists and doctors state experienced minor damage. However, my hearing as tested twice is excellent. I have better understanding after reading your post. I certainly hope FX-322 regenerates both OHC and IHC. My concern is how can they match the exact frequency of the damaged hair cells that interact with the brain? I wish these discoveries were under the fast track program (SBIR). This program gets inventions / discoveries IND etc., to commercialization much quicker than the long drawn out clinical trial process with peer reviews etc. I used to work for the NIH.
If it was around $3k-$10k I could probably ask my parents if I can borrow that much if it works. If it ends up being around $50k or more I'm fucked.
May I ask what did the douchebag do that caused your tinnitus?
@mrbrightside614
You are super intelligent an erudite, if you will, but real with your feelings. I respect that immensely. I enjoy your honest yet pedantic post. I will follow the post you referenced to gain some necessary knowledge. Keep doing what makes you happy. I need to take your lead and get the $&&@ out the house.
You are super intelligent an erudite, if you will, but real with your feelings. I respect that immensely. I enjoy your honest yet pedantic post. I will follow the post you referenced to gain some necessary knowledge. Keep doing what makes you happy. I need to take your lead and get the $&&@ out the house.
Looks like neomycin especially affects the cells close to the base (and affects OHC and IHC). I would get an extended audiogram, it would very likely be abnormal.
Frequency Therapeutics video is very impressive and promising. Thanks FGG. In theory it makes sense, now can they deliver results to all affected by IHC and/or OHC loss and at various frequency levels.
I hope @JohnAdams eventually comes back. I liked his perspective on the science. He seemed good at finding papers and information I miss.
I just think the letter is very good and hopefully it persuades Janet Woodcock at the FDA to allow Frequency Therapeutics to release FX-322 ASAP.
I wonder if the FDA were to allow them to release it right now, do you reckon Frequency Therapeutics would actually do it or would they say we will wait till Phase 3 and then release it?
@FGG
Both tests are at 8 kHz. However I have an LDL report up to 12 kHz.
Left and right ear high 90s and 110 at 1 kHz. The numbers go down for both ears the lowest number is 70/80 right ear at 12khz and 70/90 in left ear at 12 kHz. My LDLs do not go below 90 until 4 kHz. Again lowest is 70-80 in right ear. Actually docs stated that my numbers do not support hyperacusis because they are not below normal on all frequency levels. Typically the LDLs would be below 90 at .25khz and up. Mine were not below normal across the board. They concluded that the only OHC were damaged based on report and tests performed that showed no hearing loss. My problem is that I hear too good. I can hear a bird drop a load in his bowels before it hits the street. I hear planes miles away before others who don't have tinnitus or hearing loss.
Both tests are at 8 kHz. However I have an LDL report up to 12 kHz.
Left and right ear high 90s and 110 at 1 kHz. The numbers go down for both ears the lowest number is 70/80 right ear at 12khz and 70/90 in left ear at 12 kHz. My LDLs do not go below 90 until 4 kHz. Again lowest is 70-80 in right ear. Actually docs stated that my numbers do not support hyperacusis because they are not below normal on all frequency levels. Typically the LDLs would be below 90 at .25khz and up. Mine were not below normal across the board. They concluded that the only OHC were damaged based on report and tests performed that showed no hearing loss. My problem is that I hear too good. I can hear a bird drop a load in his bowels before it hits the street. I hear planes miles away before others who don't have tinnitus or hearing loss.
Pre55ure
Member
I have to think that Frequency Therapeutics plans to make it at least semi affordable to the majority of people that are going to want this drug. In all their presentations they make a point to talk about how large the potential patient group is, which leads me to believe that the economic model they are pursuing is to price it moderately and have a high volume of customers.
There are really only two ways to make money by selling something like this, sell it to a few people at a high cost, or sell it to a lot of people at a lower cost. Somewhere between there is a point where they are going to maximize their profits, but from all the talk about how large the potential market is, I really think they are aiming to get it in as many ears as possible. Whats the point of talking about how large a market you are serving if you already know you are going to be pricing out 99% of them?
They also know that there are a number of other companies working on other regenerative drugs and that they might have a limited window to sell this to as many people as possible before they have competitors that are going to drive the price down and pull potential customers away, so it's in their best interest to get this out to as many people as possible as quickly as possible and to establish a foothold in the market.
Just my guess, but I would think that they have to see it being marketable at no more than 2x the cost of hearing aids.
There are really only two ways to make money by selling something like this, sell it to a few people at a high cost, or sell it to a lot of people at a lower cost. Somewhere between there is a point where they are going to maximize their profits, but from all the talk about how large the potential market is, I really think they are aiming to get it in as many ears as possible. Whats the point of talking about how large a market you are serving if you already know you are going to be pricing out 99% of them?
They also know that there are a number of other companies working on other regenerative drugs and that they might have a limited window to sell this to as many people as possible before they have competitors that are going to drive the price down and pull potential customers away, so it's in their best interest to get this out to as many people as possible as quickly as possible and to establish a foothold in the market.
Just my guess, but I would think that they have to see it being marketable at no more than 2x the cost of hearing aids.
Me too. I hear way too good. I hope Frequency Therapeutics fixes this issue by restoring the OHCs and IHCs to fix the loudness and pain sensation. I'm worried that it might make hyperacusis worse.
I do think at the very beginning it is going to cost a lot and the more people that have their hearing issues, tinnitus and hyperacusis resolve then the price will come down and then the price will stay the same unless there are better regeneration medicines out there in the future.
With the steady proliferation with using earbuds or anything we can to cover the ear such as headphones that are not open ear this company is banking on the number of tinnitus suffers to grow. So, I agree the price may be affordable plus it's in line with their promotional strategy. I just pray that they can live up to the hype with no immediate or delayed side effects. However, in theory the method looks tenable.
I sincerely appreciate your compliments Chris... I'd probably be much more useful ironically if I hadn't been stuck with tinnitus (I was considering a career in academic research). I've never been one for pretense and that's only more pronounced upon developing something that makes everything seem frivolous by comparison. Just protect those ears with a good plug and you should be fine for the most part! Mine spikes for about 2 hours afterwards no matter what my split is, but it goes down to baseline afterwards.
There's just no way it'll be $50k. $50k gets you top-flight medical treatment and high/grade systemic stem cells for (2?) weeks in Thailand. I think $10k is a relative liberal estimate tbh. They (kind of) have to compete with hearing aids, and might even have to compete with Audion. The only reason why I'm not fanboying Audion is because they may deplete support cells but if this tech was available today, make no mistake I'd be getting that shit in my ear tomorrow.
I got my T from a 72 year old driver pulling out in front of me on a fast road, throwing me into a head-on collision (airbag blast-induced). H was absolutely horrible at first but I didn't develop T quite yet. Had a low whirring tone that wasn't so bad but every noise was absolutely destroying my ear. I didn't take time off work (strength & conditioning coach) and paid for it...woke up to the piercing eeeee a month later. GP was useless and clearly wasn't aware of hyperacusis & lowered LDLs' potential to develop into tinnitus if not appropriately protected. Just gave me some Zoloft for PTSD.
This whole umbrella of biotech really seems like the next logical step in treating hearing loss and disorders imo. Even if it takes 20 years to hone regeneration into a standardized treatment, this has got to be the direction given how limited amplification is.
We have the perfect conditions for a rampant rise in hearing issues. A society that not only refuses to turn the volume down, but is blissfully unaware of the consequences. The ancient ENTs and audiologists are practically useless and Frequency knows this. Right now there is no game in town, so it really is a race to the moon.
We have the perfect conditions for a rampant rise in hearing issues. A society that not only refuses to turn the volume down, but is blissfully unaware of the consequences. The ancient ENTs and audiologists are practically useless and Frequency knows this. Right now there is no game in town, so it really is a race to the moon.
The FDA actually did grant FX-322 fast-track status. Is SBIR something aside from this? Do you have any connections with the NIH still? I understand the NIDCD is a department within the NIH and they've opened up a comment period to the public. It would be cool to "climb the ladder" and send some of our concerns to someone at the NIH as well.
I wouldn't put too much weight into audiograms. Even my extended one might not coherently explain my tinnitus. My hearing is excellent in both ears but that doesn't mean that there aren't damaged hair cells in my left (e.g. my 25dB difference at 16kHz). I'd estimate 80-90% of tinnitus to be caused primarily by cochlear dysfunction. The question then is IHC, OHC, synapse or spiral ganglion. Spiral ganglion is extremely unlikely though since IIRC even the profoundly deaf retain reasonable functionality at that level.
@mrbrightside614
FDA and several other agencies issue their own SBIR/STTR omnibus solicitation typically once a year asking for grant applications for various research topics for phase 1 and 2. It sounds like FX-322 is under FDA's Small Business Innovative Research (SBIR) Fast Track Program. Unfortunately, I have no connections with NIDCD.
Another person with excellent hearing and tinnitus. The number just keeps growing. wow.
You are the second person today that indicated excellent hearing but tinnitus .
Even though docs have showed me test results indicating OHC damage, I really don't know what to believe. It could be the synapses or something else as you suggested. All I know is my ears are ringing with occasional soreness in left ear. Now, that is conclusive. If our problem is cell damage I hope companies like Frequency Therapeutics truly deliver the goods.
FDA and several other agencies issue their own SBIR/STTR omnibus solicitation typically once a year asking for grant applications for various research topics for phase 1 and 2. It sounds like FX-322 is under FDA's Small Business Innovative Research (SBIR) Fast Track Program. Unfortunately, I have no connections with NIDCD.
Another person with excellent hearing and tinnitus. The number just keeps growing. wow.
You are the second person today that indicated excellent hearing but tinnitus .
Even though docs have showed me test results indicating OHC damage, I really don't know what to believe. It could be the synapses or something else as you suggested. All I know is my ears are ringing with occasional soreness in left ear. Now, that is conclusive. If our problem is cell damage I hope companies like Frequency Therapeutics truly deliver the goods.
1:04 is the timestamp where the IHCs regenerate. Look halfway back. It looks like IHCs regenerate at 1:44 too.
Agree that 0:30 shows just OHCs being destroyed though.
HootOwl
Member
The one at 1:44 is much much clearer. Those are definitely IHC being regenerated.
And at 1:04 it wouldn't make sense that nerves reattach in the animation if there is no new IHC to attach to since they said they are not a synaptopathy drug in isolation.
I don't think they would animate something like that if they didn't regrow IHC in some quantity. That would be a pretty massive oversight on whoever was overseeing the animation team.
It's really interesting that you used to work for the NIH. I would PM you this if I could, but would you be at all interested in a political lobbying group that some of us are involved in here? If so, I'll mention your name on the next conference call and we'll have someone get back to you about some ways that you might be able to help? My biggest drive for this group is 1) getting hearing loss/tinnitus treatments better grants and quicker timelines for release and 2) forming a better relationship with various veterans groups to get greater numbers and support from a well-respected and powerful lobbying group that's disproportionately affected by tinnitus.
If you're interested in more quality information about the origin of your hearing issues, you can ask your local university if they provide extended frequency audiograms and speech-in-noise tests. Universities can test up to 20khz.
An abnormal speech-in-noise test would indicate cochlear synaptopathy ("hidden hearing loss" from cochlear nerve damage) as the root of your problem and would indicate that PIPE-505/OTO-413 would likely be of greater use to you than FX-322. My speech-in-noise was thankfully very good as well, so my money is on the bulk of my tinnitus being derived from sudden 16khz hearing loss—OHC/IHC-based, cured by hair cell regeneration.
@Jaysterk LDL = loudness discomfort level.
So I live in Connecticut where Frequency Therapeutics has their research lab. But unfortunately, the closest clinical trial center to me is in Amherst, NY (6 hours away). I really want to go and visit their research center in person, or give them a call to see if I can somehow receive this revolutionary treatment without having to make that long trip. How likely do you think it is that they may accommodate me? I have been dealing with hearing issues for 5 years now (from 2 Queen concerts presumably), and at the age of 23 it is a bit debilitating. Also, do you think they may add more clinical trial sites for phase 2b and 3?
Thanks everyone in advance for the help!
Thanks everyone in advance for the help!
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