SciFluor Receives US Patent for KCNQ2/3 Activator to Treat Epilepsy and Neurological Disorders

Interesting, but outdated info, I'm sure...http://www.enttoday.org/article/new-drug-may-help-prevent-treat-tinnitus/

Not sure why this just occurred to me. The article mentions preventing tinnitus in mice...

1) How does tinnitus present itself in subjects who don't speak - like MICE?
2) How do they know what prevent tinnitus - even in a mouse - if no one really knows who will get it and why?

 

So it's September 2017.

Have there been any updates on SciFluor?

@attheedgeofscience
@Zimichael

Seems the most recent correspondence with the company is advising patients they are not disclosing information regarding if and when they will begin human trials.

 

I have not been following the Pittsburgh community particularly closely for "some time" now. I therefore have not attempted to gain insights into the pipeline of SciFluor Lifesciences or Knopp Biosciences (along with whoever ends up owning the RL-81 pipeline). But just this afternoon, I did briefly scan the investor news and noticed - via Allied Minds (the parent company of SciFluor) - that testing of SF0034 has begun in healthy volunteers (see below):



The complete presentation is attached. I should mention that I do not know (or even believe) that tinnitus is in scope for what trials may lie ahead (tinnitus is simply too difficult a condition to bring medication to the market for; especially for companies low on cash). Of course, that is just my own (reasonable) opinion - and not a hard fact.

And after a long period of appearing idle, I noticed Knopp was beginning to gear up as well. I can share the one and only presentation the most secretive pharma entity out there made in another thread (if there is any interest in that).

 

I would be interested.
Thank you.

 

So do drugs like these only help in the acute phase?

 

I'd say no. At least for me, Trobalt worked (and still works) years after onset.

 

That's good to know.

 

I have noticed that, despite that phase 1 seems to have begun, as stated by @attheedgeofscience last week, SF0034 has completely vanished from SciFluor's website. This is how their pipeline looks like now, and this is how it looked like in June. Please note that:

• in June, SciFluor had "two lead compounds in development [SF0166 and SF0034]";
• now, "SciFluor’s lead drug candidate is SF0166".

What's going on with SF0034?

 

Wow, that's very recent (maybe 2 weeks ago). Hope there are not bad news.

 

Terrific

 

I got in touch with them. I specifically asked them what happened with SF0034 (e.g. if it's been cancelled), yet this is what they responded:

 

Oh thank goodness. That scared the shit out of me.

It's very far from hitting market but as long as it proceeds that's good news.

 

Actually, I wouldn't take this as good news. However, I have asked them again about its status.

 

People ask both questions all the time. Answer to 1st question is, some human's have learned to decipher rat speech aka their language. Yes, a bit scratchy and almost unintelligibe but if listening carefully which isn't easy with tinnitus, many times you can hear them talking about it....when their tinnitus spikes based upon type of cheese they eat, if they are having a bad day etc.
Second question...the reason doing experiments on rats is meaningful is...some humans act like rats so the mechanism of tinnitus is thought to be analogous.

 

If you take Trobalt three times a day, do you notice your tinnitus becoming louder just before taking each dosage...or just as you wake after a night's sleep before taking your first pill in the morning?
thanks.

 

What do you mean by louder? Tinnitus fades away minutes after I take the pill and comes back gradually hours later to baseline. So yes, tinnitus is louder before taking the next pill because the effect of the previous is gone, but it's not louder than normal.

 

Thanks for your reply which makes sense but I think of my tinnitus in terms of loudness. Yes, I have some variation in frequency aka tone, but my tinnitus varies sometimes hour to hour and day to day in how loud I perceive it to be. If you don't think of your tinnitus in terms of loudness in spite of using the terms 'fading away' to describe its variation, what term(s) would you ascribe to define how your tinnitus varies?

Also, with all the suffering throughout the world due to tinnitus, and because Trobalt has helped you, can you posit a reason that Trobalt hasn't been more widely promoted as symptomatic relief for tinnitus?

Thank you.

 

Maybe I wasn't clear enough. Trobalt shuts down my tinnitus (I can objectively say that it reduces the volume to almost zero; there's still a residual ringing that I can only hear in quiet environments putting my fingers on my ears) and so does the annoyance (I have noticed that it acts somehow as a mood enhancer). I can completely forget about the tinnitus for as long as the pill's effect lasts.

Long term side effects are too severe and not worth the risk. I don't know if Kv channel modulators can cure tinnitus (that is, eliminate it permanently after some time under medication), but I do think that, at least, these more powerful
and safer versions of retigabine could be a huge relief for us, even if they have to be taken on a daily basis.

 

If you say the long term side effects of taking Trobalt are too severe and not worth the risk, why do you take it?
Apparently the risk is worth it to you, or you would take it.

Could you expand a bit?
Thanks.

 

I'm not taking it.

By the way, we should stop discussing this here. If you want more information, there are two threads in the Treatments section about retigabine.

 

I think what @acufenero is saying is that after the risks were publicized he stopped taking Trobalt. Back in early 2015 the risks weren't as widely known or shared.

 

That seems to rhyme with the fact that Trobalt has been entirely pulled from the market here in Norway due to severe side-effects, and by the producing company's own wishes.

 

I see, you are no longer taking it due to perceived risk even though Trobalt was overwhelmingly effective in quieting your tinnitus.

Could you shed some light on why there is any reason to believe that what you coin 'safer versions of retigabine' being developed and/or tested are indeed safer? What chemical properties have changed to constitute 'safer versions of retigabine' such that there isn't a negative interaction with the human body and yet still effective?

Thanks

 

I can't help you with that. It's what the companies that are developing these new versions of retigabine say. Check this thread from the beginning and this one.

 

They added Fluorine into the chemical compound, so with this drug you don't have to brush your teeth!

 

This appears ambiguous to me. Why would they remove the SF0034 from their website if it was still under development and going into clinical trials in the future? Perhaps somebody should contact them again and ask for a direct answer.

 

I did:

 

Well they haven't specifically said it's been cancelled and informed you to keep checking the clinical trial website. What is odd though the removal of it on their website and why? Anybody have any reasonable guesses?

 

If not discontinued, they are electing to withhold updates from the public.
This could be concern over the efficacy without more testing...or...it has real veracity and they don't want to tip their hand about how viable it is.

To me, part of the lack of disclosure to the tinnitus community is literally shrouded in the race to the top. Who is going come forward with the most viable practice to help those debilitated with tinnitus...be it a pharma or electrical device. To such a group of researchers, they should reap the deserved financial windfall.

Apple or other tech companies don't share much what they are working on either and for good reason. I see a parallel here.

 

Update On SciFluor / SF0034

It's been a while since I posted last in this thread about SF0034. The lack of progress in bringing SF0034 through clinical trials is something I have been watching from a distance on-and-off, however. Since information has been so scarce from SciFluor itself, I decided last year to follow the parent company, Allied Minds. In the half-year report for 2017, the trial for SF0034 was described as having been initiated (a fact that would seem somewhat contradictory compared to the lack of information being shared by SciFluor):



In January, I tried to follow-up with SciFluor to try to understand the discrepancy (i.e. why is SF0034 listed as active via Allied Minds when the company website of SciFluor is blank on the subject). The company did not respond (immediately), but earlier this week, I eventually got a response from the CEO. I would prefer not to relay the message word-for-word, but what I can say is that it triggered me to review the recently released full-year report from Allied Minds which confirms that SF0034 is halted:



So, it would seem that this long ongoing saga about an improved version of Trobalt can be put to rest for now. I don't have any further information about RL-81. But should the Frontiers Research Topic on tinnitus heterogeneity take the prize, then I will be having follow-ups with certain researchers because of that and I will perhaps learn something during that occasion. We shall see.