They actually are recruiting at some of the trial sites according to Jonathan Kil at Sound Pharmaceuticals. I believe the Michigan test site completed recruitment according to some of the other members here. If there's a test site you're interested in, I would reach out to Sound Pharmaceuticals to see if they're recruiting.
That is great news! Hopefully they can start the trial ASAP; I'd love to try it out but I don't have Meniere's nor am I US based.
They haven't listed locations yet on clinicaltrials.gov for the COVID-19 trial, so they definitely haven't started recruiting yet.
Their current otoprotection trial is here:
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This is amazing news, and I've submitted a couple questions. I really, really hope that there is a focus on how this medication could help hyperacusis and how urgently it is needed by those of us who are suffering from it. It truly could save lives if it helps.Hi there, good news: Sound Pharmaceuticals agreed to come on the Tinnitus Talk Podcast
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I'd love for this medication to be available as soon as possible, but I fear it won't be available until sometime in 2023 because the Phase 3 Meniere's trials don't end until December 2022.
They haven't even started recruiting for COVID-19 trial yet; who knows when/if they're going to move forward with it.
I struggle to know what to ask about any treatment other than FX-322, because even after perusing the threads, it's murky to me what they specifically do, or are intended to do. I'd like to have more than one horse to bet on in this race, but I need a clearer and more concise description of what each treatment does (e.g. "FX-322 reactivates the cells that normally only produce hair cells while we are in the womb, and in its current delivery method seems to only help with high frequencies due to how far it reaches into the cochlea."); I've been unable to find this sort of Cliff's Notes-style summation for the majority of drugs being tested and discussed.Hi there, good news: Sound Pharmaceuticals agreed to come on the Tinnitus Talk Podcast
We don't have a specific date set yet, but it might happen rather soon. Hence, we want to start collecting your input. Please fill in our survey below to provide us with any questions you might have for Sound Pharma.
Please update us and if possible share what they say in their response. I think a lot of people would be interested in that. The drug should be available in 2022.
I will definitely update. I sent them a personal email a few months ago with no response, so I am hoping that they get back to my physician at least. If they don't, next step is to get my physician to call them.
Hoping so too, thank you!
I don't want to be a big party pooper. But I did the same as you. Asking for compassionate use. Emailed them 3 times. Called 5 times. Let my doctor email 2 times. I never ever received one single response. So don't get your hopes up.
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There's still the Kv7 drugs like XEN-1101 and the Trobalt reformulation. Also Nav1.7 blockers, they seem far away but there's a lot of money going into them. But yes, generally speaking we remain fucked beyond belief.
Seeing as our joint flight to the US to get FX-322 is probably canceled for now, could you give me the rundown on SPI-1005?I don't want to be a big party pooper. But I did the same as you. Asking for compassionate use. Emailed them 3 times. Called 5 times. Let my doctor email 2 times. I never ever received one single response. So don't get your hopes up.
"Boosting up the habutation
This company has a promising Nav1.7 blocker in pre-clinical. Seems roughly where the Trobolt reformulation is since they are starting to be talked about in biotech circuits:
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