Hough Ear Institute's Hair Cell Regeneration Project

Discussion in 'Research News' started by all to gain, Oct 2, 2019.

    1. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      The doctor doesn’t have it. He has to apply to get it.
       
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    2. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      Thank you for making efforts to participate in trials.
       
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    3. Piney

      Piney Member

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Shingles virus
      "Dr. Santosh Kesari of the Saint John's Cancer Institute in the U.S., who had conducted clinical trials to treat recurrent glioblastoma of HLB Therapeutics, suggested its possible efficacy in tinnitus."

      Or does he? Maybe he has jars of it. Either way people will have to reach out to him.
       
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    4. SB1981

      SB1981 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Multifactorial
      Seems dismissive as a response to what I wrote.
       
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    5. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      Not at all. I respect your point of view. Should have started with that. :)
       
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    6. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Thank you for saying exactly how I feel and much more eloquently if I may add. If I wasn’t in such a severe state of distress it might be easier to pine through hundreds of posts in a thread or a research paper. Hopefully we can all consider this and be more compassionate towards each other. I’ve often found other Tinnitus Talk members’ criticism very harsh that I was even asking questions as opposed to searching through threads or the forum itself.
       
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    7. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      THIS is so much smarter than what I did.

      Please keep us posted and I will follow your lead as well.
       
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    8. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      I’ve made a telehealth appt with Dr. Kesari for next week. He wouldn’t tell me anything regarding the existing compassionate use case for obvious reasons I guess but he was very welcoming of my telehealth appt knowing my objective. I’ll keep you all posted. I am half an hour from Oblato Inc.
       
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    9. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Did you call? I emailed them and sent messages on their website. No response.
       
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    10. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Hi @Brian Newman, yes I did. Here’s the number for the telehealth line and the email for the coordinator:

      310-582-7600
      melissa.alvarezamaya@providence.org
       
      • Useful Useful x 1
    11. Eliot Martin

      Eliot Martin Member

      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Medications
      E-mail I received from Oblato:

      Dear Eliot

      Thank you for your e-mail and sorry for the late reply.

      This NHPN-1010 will be developed for the treatment of Meniere’s Disease, tinnitus, and noise-induced hearing loss and so on. But, the only way to join the clinical trial at this moment is the EAP study below.

      Oblato, as a sponsor, can provide the study drug (OKN-007) through the compassionate study for the case of you as requested. Please refer to FDA expanded access (link: https://www.fda.gov/news-events/public-health-focus/expanded-access) for the compassionate study to move further.

      There are multiple steps to conduct the compassionate study. In terms of the compassionate study,

      1. Physician has to submit Investigational New Drug Application (IND) and get an approval of the compassionate study to FDA as a sponsor-investigator.

      2. While the physician’s IND is approved by FDA, Oblato will discuss with the physician for relabeling of the drugs, and supplying to the physician based on the physician's protocol.

      3. Oblato will make the confidential & clinical trial agreements with the hospital that the physician will conduct the compassionate study.

      4. Once the IND has been approved and the agreements have been executed, Oblato will supply the study drug to the physician.

      ※ This is not a CLINICAL TRIAL by Oblato, so the physician will be responsible for all about the study and Oblato will only serve the study drug to the physician as a supplier.

      I hope this can be helpful and please let me know if you have other questions.

      Best regards,
      TED
      ===================================================
      Ted UM
      Director / Clinical Trial Division Oblato Inc.
      US: 116 Village Blvd, Suite 200 Princeton, NJ 08540, USA
      Korea: 22nd FL, Parkview Tower, 248 Jungjail-ro, Bundang-gu, Seongnam-si,
      Gyeonggi-do 13554, Korea T. +82-31-786-7744 F. +82-31-786-7799
      ===================================================​
       
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    12. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
    13. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Great share! We appreciate it a lot!
       
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    14. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      I received the same email. I just hope physical distance can be worked out since I'm on the East Coast. Hoping these are general guidelines as opposed to the meds being sent to the doctor and dispensed physically by the doctor.
       
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    15. ColinUK

      ColinUK Member

      Tinnitus Since:
      2013 initial, worsened 2020
      Cause of Tinnitus:
      Initial Music Gig, Worsened Cinema or possible covid
      Come on Oblato, get a move on :mad: :eek: :D
       
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    16. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      I emailed Oblato asking if they accept foreigners, here is their response:

      “Unfortunately, as we don’t have a plan to perform EAP study abroad due to real issue in practice, you need to contact any available US physician who has a positive mind for the EAP study which targets at foreign patients. Though you will meet the US physician who has a plan for the EAP study for you, you need to come and join the EAP study in US and It takes so long time to stay in US to get the intravenous injection by three times a week for 8 weeks for EAP study.”

      I am confused though, I thought this drug was a pill, not an injection. Anyone has an idea?
       
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    17. DimLeb

      DimLeb Member

      Tinnitus Since:
      03/2021
      Cause of Tinnitus:
      Idiopathic Cochleopathy or Maybe Loud Music
      Injection? What?! Are they sure about that?
       
    18. scotty03874

      scotty03874 Member

      Location:
      Boston / Miami Beach
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Slap to the ear / Leading to more issues
      I also thought this was a pill.
       
    19. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      I asked Oblato if they can clarify. I will share their reply when I get it. Dr. Santosh Kesari might also shed a light on this as apparently he is involved in the EAP; some of us are planning to talk to him, if I remember correctly, so hopefully we will gather more info soon.
       
      • Helpful Helpful x 1
    20. DimLeb

      DimLeb Member

      Tinnitus Since:
      03/2021
      Cause of Tinnitus:
      Idiopathic Cochleopathy or Maybe Loud Music
      Thank you honestly, we are very grateful for the information and looking forward to seeing what comes out of this!
       
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    21. SB1981

      SB1981 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Multifactorial
      823-AAFD1-70-E6-4129-854-C-A5593-A20705-F.png

      There are two different drugs here it appears. A pill and an injection. This was discussed very early in the thread. I haven’t kept up with this and was away from the board for quite some time so I have no further info, but there may be more following the post I screenshotted above.
       
      • Informative Informative x 3
    22. David S

      David S Member Benefactor Ambassador

      Tinnitus Since:
      10/2013
      I have not followed this thread lately. What a cliffhanger...

      I keep my fingers crossed that you can work something out around this "compassionate use".

      Might be the way forward for a lot of the other candidates in development.
       
      • Like Like x 1
    23. DimLeb

      DimLeb Member

      Tinnitus Since:
      03/2021
      Cause of Tinnitus:
      Idiopathic Cochleopathy or Maybe Loud Music
      @SB1981, "Commercialized product expectations: Pill = Mid-2020s. Injection - Late 2020s." I spilled my liquid Magnesium laughing over that. Lol, what a joke.
       
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    24. grate_biff
      Depressed

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma using headphones
      tinitus waitingroom.jpg
       
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    25. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      My consultation with Dr. Kesari is next Friday. Wish me luck, folks. Going to bawl my eyes out which is a daily occurrence and see how far that gets me. My case is severe at least in my perception so it won’t take much for me to have a breakdown during the appointment.
       
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    26. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Is it a surprise that everything is always “5-10 years away”. Really hope that if we do get relief this decade that it will be available to the masses and not derailed by any existential threats, lack of funding, etc.
       
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    27. ThomasRobert

      ThomasRobert Member Benefactor

      Location:
      ME
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Ototoxic
      First they ask for donations, then they say pill, then they say a journalist got things wrong, then Oblato's website mentions nothing about hearing loss in their pipeline, then they say it's a cancer pill that works for the ears, then they say their pill can cure everything from hearing loss, Meniere's disease and tinnitus! It's a promo all in one :)

      Amazing!

      Oh! And it's an injection you have 3 times a week! What happened to the Frequency Therapeutics' cake theory and the watering too much seeds thing!?
       
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    28. ThomasF
      Creative

      ThomasF Member

      Location:
      Florida
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Probably loud music
      The Tinnitus Talk Podcast episode went over a number of similar topics. One was the two different drugs that were being developed by Hough Ear Institute. The pill is primarily intended as an aid to those who've experienced sudden auditory trauma like that of an explosion. Hence the "bomb blast pill" term. This was focused towards repairing the damaged nerve endings and their relationship with tinnitus. In the case of the injection, basing from memory of the podcast, is intended to be used in the restoration of hair cells. That was what the doctor involved on the episode said. Not the funding coordinator De Moss.

      The cancer focus has to do with the effects of chemotherapy on nerve endings in the ear which is a common site of both injection and damage during the treatment of the disease.
       
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    29. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      Oblato’s reply:

      “The dosage form for NHPN-1010 is oral form, but we just only support the EAP process with the intravenous injection at this moment due to internal situation.”
       
      • Informative Informative x 2
    30. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Hey, please do me a favor, stay calm during your consultation. Trust me, panicking to doctors will not get you anywhere, especially for tinnitus. We definitely don’t want anybody to rub off wrong on him, and then he decides that the drug was not worth the hassle and is not something he wants to deal with because he usually only works with cancer patients.

      I did tell everybody to do it and try to get it. I’m not sure how new you are to tinnitus, your profile is recently created, maybe you had it longer and created the profile recently. Tinnitus is a horrible, scary disease no matter what, but remember this drug is for compassionate use. This drug is for somebody who has had the disease for years and has tried every alternative, and is horribly suffering or dying. I’m not sure if he would apply a recent tinnitus case for compassionate use, unless I am wrong and you have had tinnitus for a while. I have studied this specific drug for half a decade and know its properties, and how it directly affects the inner ear.

      Truly, besides my pretty bad tinnitus, I have catastrophic nerve pain in my ears that I believe can be treated with this drug. And my life depends on this drug or another regenerative medicine. I have not worked in 9 months. I have been homebound for 7 months. I have been throwing up from the pain. I can barely shower. I can’t exercise, I can’t get groceries, I can barely talk, I am completely incapacitated, not just by tinnitus, but pain hyperacusis as well. Not only do I have to listen to my tinnitus all day in silence, I also have to endure nonstop pain and depression from how much this has taken from me.

      So please I beg of you, do not talk to him crying or panicking saying you were told by somebody on a forum that this drug could work. My appointment will probably be after yours. I do not want him getting the wrong idea. I have read some of your posts and you seem like a smart person, I hope you have done your research about this drug and can impress him. I will not undermine your suffering. I want you to get the drug. I want you to get better. I want everybody cured from this disease. If you truly think you will not be able to hold on much longer and your entire life has crumbled into pieces, by all means get this drug. Please be calm and composed and do not risk the chance of me or others getting it from him. I know any doctor can apply for it but most don’t care or even know about this drug so most won’t do it. This doctor does. I hope you get relief soon.
       
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