Frequency Therapeutics — Hearing Loss Regeneration

[JohnAdams]

Thank you for your answer !

Another thing bothers me, I feel like I don't have a speech-in-noise hearing difficulty. I have done several tests that have been found to be normal on this problem, but not perfect, hence my questioning. I hope that OTO-313 and OTO-413 can still help me with my tinnitus. I also know it appeared during a period of stress due to exams, but it mostly appeared the day after that damn concert.

Well OTO-413 is for hidden hearing loss. We can only hope this helps our tinnitus. Some smart minds think it will. Maybe we have lost a few hair cells and the changes in the nerves will correct themselves upon restoration of input. That is what I am hoping.

 

[Simon Czt]

Well OTO-413 is for hidden hearing loss. We can only hope this helps our tinnitus. Some smart minds think it will. Maybe we have lost a few hair cells and the changes in the nerves will correct themselves upon restoration of input. That is what I am hoping.

Time and trials results will tell us! I can't wait. In the meantime, I'll keep taking curcumin.

 

[ChrisBoyMonkey]

Thank you for your answer !

Another thing bothers me, I feel like I don't have a speech-in-noise hearing difficulty. I have done several tests that have been found to be normal on this problem, but not perfect, hence my questioning. I hope that OTO-313 and OTO-413 can still help me with my tinnitus. I also know it appeared during a period of stress due to exams, but it mostly appeared the day after that damn concert.

You should also look into Lenire and the Michigan device. These things are targetting tinnitus itself. I really don't mind any hearing loss I may have, as like yours it's barely noticeable if any. I just want the noise to be gone.

 

[Daniel Lion]

With the right to try legislation changed under the Trump administration, could @RB2014 or @GlennAz or myself have a good case to basically get in on a trial and get access to the small molecule drugs or biochemical innovations for the inner ear and nerve damage?

Would it make sense to write a letter to the top brass from this company asking for access due to the debilitating nature of our hearing loss condition?

Should tinnitus even be mentioned?
The condition may be more advantageous to treat and more effectively argued separately.

Could we do this as a group?

What are the legal ramifications for access to hearing loss drugs?

 

[JohnAdams]

With the right to try legislation changed under the Trump administration, could @RB2014 or @GlennAz or myself have a good case to basically get in on a trial and get access to the small molecule drugs or biochemical innovations for the inner ear and nerve damage?

Would it make sense to write a letter to the top brass from this company asking for access due to the debilitating nature of our hearing loss condition?

Should tinnitus even be mentioned?
The condition may be more advantageous to treat and more effectively argued separately.

Could we do this as a group?

What are the legal ramifications for access to hearing loss drugs?

Would Frequency Therapeutics even agree to participate?

 

[Coleoptere]

Not so sure you qualify for this law:

Right-to-try laws are U.S. state laws and a federal law that were created with the intent of allowing terminally ill patients access experimental therapies (drugs, biologics, devices) that have completed Phase Itesting but have not been approved by the Food and Drug Administration (FDA). Prior to the passage of Right to try laws patients needed FDA approval to use experimental drugs. Requests were granted 99% of the time immediately over the phone or within a few days.

Try to call the FDA if you think you do!

https://en.wikipedia.org/wiki/Right-to-try_law

 

[Daniel Lion]

Not so sure you qualify for this law:

Right-to-try laws are U.S. state laws and a federal law that were created with the intent of allowing terminally ill patients access experimental therapies (drugs, biologics, devices) that have completed Phase Itesting but have not been approved by the Food and Drug Administration (FDA). Prior to the passage of Right to try laws patients needed FDA approval to use experimental drugs. Requests were granted 99% of the time immediately over the phone or within a few days.

Try to call the FDA if you think you do!

https://en.wikipedia.org/wiki/Right-to-try_law

You are correct, it probably won't qualify after reading the wording in the link.

 

[Daniel Lion]

Would Frequency Therapeutics even agree to participate?

I believe if their product works they would consider it.

I am sure they would be stoked to help people and get great publicity.

 

[JohnAdams]

With the right to try legislation changed under the Trump administration, could @RB2014 or @GlennAz or myself have a good case to basically get in on a trial and get access to the small molecule drugs or biochemical innovations for the inner ear and nerve damage?

Would it make sense to write a letter to the top brass from this company asking for access due to the debilitating nature of our hearing loss condition?

Should tinnitus even be mentioned?
The condition may be more advantageous to treat and more effectively argued separately.

Could we do this as a group?

What are the legal ramifications for access to hearing loss drugs?

Go back about a year in this thread and MPP and you'll see how hard I was trying to argue for us to get organized to bring public attention to this (and how much effort certain people were exerting to shut me down).

 

[Ozwel]

When you expose yourself to loud sounds, your supporting cells generate a lot of glutamate, which in large quantities causes glutamate excitotoxicity in your auditory nerve synapse. This is called the "glutamate storm". That could be the root of many of our tinnitus cases. This would explain tinnitus in people like you and I that have very little measurable hearing loss.

If this is the case and our hair cells aren't dead, then I fail to see how FX-322 will help. There are other things like OTO-313 and OTO-413 that would be more likely to help.

Hi, interesting reading from you. First time I read about that glutamate storm.

And how would that storm induce something permanent?

I haven't read a lot about those two OTO drugs.

I may give Curcumin a try with a few grams per day but I have tested so many things over the years... Curcumin included but it was as part of another cure for another problem (brain fog + vertigo) and with a dosage of <1g.

I'll have to learn about the OTO drugs anyway, it looks like it deserves some interest according to you. Right?

 

[JohnAdams]

Damnit. If any of these trial participants reported a lowering of tinnitus then that knowledge would be very helpful for the world of tinnitus research. They need to come out and just say yes or no for the sake of humanity.

 

[Rb86]

Damnit. If any of these trial participants reported a lowering of tinnitus then that knowledge would be very helpful for the world of tinnitus research. They need to come out and just say yes or no for the sake of humanity.

I know right? All secretive. Just get on with it!

 

[Daniel Lion]

Damnit. If any of these trial participants reported a lowering of tinnitus then that knowledge would be very helpful for the world of tinnitus research. They need to come out and just say yes or no for the sake of humanity.

Agreed.
If they only knew the degree of suffering.
Maybe they do.
Thank f%ck summer is ending and all the academics, scientists, and money makers will be back to work.

 

[JohnAdams]

Why aren't we, as a community, demanding that these new ear drugs like FX-322, BDNF, NT-3 etc, be tested faster? There could literally be shit sitting on shelves right now that could restore most of us back to good health. BUT NO. We have to wait a year for each little tiny question to be answered and that's bullshit.

 

[Rb86]

Why aren't we, as a community, demanding that these new ear drugs like FX-322, BDNF, NT-3 etc, be tested faster? There could literally be shit sitting on shelves right now that could restore most of us back to good health. BUT NO. We have to wait a year for each little tiny question to be answered and that's bullshit.

Unfortunately every drug development is like this, down to real fatal ailments like cancer. Takes a lot of money and research to ensure there are no really bad side effects and that it's effective.

 

[JohnAdams]

Takes a lot of money and research to ensure there are no really bad side effects and that it's effective.

Stop defending the status quo.

 

[Rb86]

Stop defending the status quo.

I'm not. But do you really think if they had the option to spend less money on research and be able to rush to market and start making money they wouldn't take that?

It's there for a reason. God forbid they rushed it to market and it made you fully deaf with worse tinnitus, or some weird side effects like you lose your taste forever or something crazy.

These things take time. Period.

 

[JohnAdams]

I'm not. But do you really think if they had the option to spend less money on research and be able to rush to market and start making money they wouldn't take that?

It's there for a reason. God forbid they rushed it to market and it made you fully deaf with worse tinnitus, or some weird side effects like you lose your taste forever or something crazy.

These things take time. Period.

IT DOES NOT NEED TO TAKE 1 YEAR TO DO A 3 MONTH STUDY.

 

[ajc]

IT DOES NOT NEED TO TAKE 1 YEAR TO DO A 3 MONTH STUDY.

But it does. You live in a fairy tale world where science and trials should happen at the speed of lightning, f**k the system, f**k the establishment, operate million dollar research projects and run trials in some backyard factory with no bureaucracy, yeah... that's not reality.

1) Preparations, legal and medical
2) Organizing trial sites, personnel
3) Recruiting patients
4) Running the trial (often a 3 month trial lasts 1 year or more because not everyone starts the trial on the same day, it runs continuously for a year or so)
5) Analyzing the trial results
6) Publishing the results, waiting for peer review (can take up to 6-9 months in the peer review queue)

Capisce?

 

[JohnAdams]

Capisce?

You're not going to convince me that it is as fast and efficient as it possibly can be, because it isn't. Capeeeesch? I know a woman that owns a biomedical device company that has moved several products to market and I have the exact same opinion of the system, especially the FDA, as she does.

 

[Rb86]

It is what it is my friend. Trust me. I want "out" of this just like you.

Luckily, this medicine has gotten involved internationally, so I assume that bypasses any FDA red tape here in the United States.

If it's legit, we'll know. Besides, results of the first trial is supposed to be released soon.

Again, you have to understand, if they could be making profit quicker they would.

Many promising medicines get lost in the pipeline due to lack of funding. That is not the case here. We're in good standing. Just chill.

 

[Ozwel]

I'm coming to this thread every ~6 months and I'm amazed when I see posts here nearly everyday whereas Frequency Therapeutics may only publish some info twice a year.

 

[JohnAdams]

I'm coming to this thread every ~6 months and I'm amazed when I see posts here nearly everyday whereas Frequency Therapeutics may only publish some info twice a year.

People talk about stuff. Go figure.

 

[Coleoptere]

We are in an in-between trial period of about half a year. Doing nothing... No parallel preps or so... fully agree with @JohnAdams.

 

[Don Tinny]

Unfortunately every drug development is like this, down to real fatal ailments like cancer. Takes a lot of money and research to ensure there are no really bad side effects and that it's effective.

But the process doesn't work very well. There are a lot of drugs with permanent side effects, sadly.

 

[JohnAdams]

But the process doesn't work very well. There are a lot of drugs with permanent side effects, sadly.

Exactly. That's one thing that the defenders of the system always fail to realize. I really cannot understand how or even why people would defend the the system the way it is now.

 

[Rb86]

Yeah, and those permanent side effect cases are either statistically experienced in small numbers, or the positive outweighs the negative.

That also has nothing to do with the system. It's the drug itself.

Some drugs might cause random side effects in 7 percent of people, while it's life changing in a positive way for the large majority. It's a risk you take.

Stop complaining about the system. It's there for a reason.

My Dad has been in the pharmaceutical industry his entire life. He's overseen therapies through trial to market. I have seen first hand the realities to why the system is the way it is.

You have no ground.

 

[JohnAdams]

Stop complaining about the system. It's there for a reason.

Nope.

My Dad has been

I'm sure you look up to your dad but his opinions don't judge the universe.

 

[Rb86]

You've got to understand. I suffer from tinnitus greatly. I've never heard silence not even once since it began. I want a cure yesterday just like we all do.

But I've spent my life growing up around the industry. For the last 10 years my Dad ran his own business that assembled agreements with the top medical universities and funding pools to accelerate cures for rare infectious diseases. He knows one of the funders for Frequency Therapeutics and said he's a smart guy who wouldnt invest in just anything. Prior to that, he spent 35 years working for Bayer, and oversaw drugs from infancy to market that are still prescribed every day of the week. My wife is a pharmacist.

I'm not making shit up here. I suffer from tinnitus too. I want a cure too. But the process is the process, and it's there for good reason. There is literally no money to be made by slowing everything down.

 

[Don Tinny]

Yeah, and those permanent side effect cases are either statistically experienced in small numbers, or the positive outweighs the negative.

That also has nothing to do with the system. It's the drug itself.

Some drugs might cause random side effects in 7 percent of people, while it's life changing in a positive way for the large majority. It's a risk you take.

Stop complaining about the system. It's there for a reason.

My Dad has been in the pharmaceutical industry his entire life. He's overseen therapies through trial to market. I have seen first hand the realities to why the system is the way it is.

You have no ground.

Just look at drugs like Accutane or Finasteride. They are made to treat minor problems such as moderate acne or baldness and have potential permanent side effects. Finasteride destroyed my "hormonal system". How can it be approved to treat such a mild problem? And there are thousands of stories on the Internet. Look at the amount of people here who got their tinnitus from taking a pill like Clonazepam. They are clearly not well tested or the system is corrupt.