Hough Ear Institute's Hair Cell Regeneration Project

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

    1. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Not expecting a miracle but it’s worth a try. I need relief or I will not be around much longer. Anything that has potential regenerative effects even in mice needs to be tried before I do anything drastic. I must try all drugs or see if any of the drugs in the pipeline go to Phase 3. If I don’t think there’s a chance after the results this year, I will be starting surgery after surgery, I will remove my inner ear if I have to. This level of noxacusis is not livable.
       
      • Hug Hug x 10
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    2. Franci003

      Franci003 Member

      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Unknown
      Another email from Ashley from Hough Ear Institute with regards to hyperacusis. Just asked her about inner ear damage, cochlear hydrops and Meniere's disease. Fingers crossed we get things for all types of damage or tinnitus and other conditions soon.
       
      • Informative Informative x 4
      • Winner Winner x 1
    3. prowlinacage

      prowlinacage Member Podcast Patron Benefactor

      Tinnitus Since:
      05/10/2020
      Cause of Tinnitus:
      Long-term noise exposure
      Is it me or does it seem like HEI's Philanthropy Coordinator is getting a little over her skis here?
       
      • Agree Agree x 2
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    4. Bambam0
      Cool

      Bambam0 Member Podcast Patron Benefactor

      Tinnitus Since:
      2/2018
      Cause of Tinnitus:
      Drums
      Who all have actually applied for compassionate use so far? If someone does, will they outline the process they used?
       
      • Good Question Good Question x 2
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    5. Mentos

      Mentos Member Benefactor

      Location:
      Cracow, Poland
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Noise induced, loud rock concert
      She allows herself more than Justin De Moss did for sure, seems to me more honest and opened than her predecessor though. At least she does not end each of her email asking for donations.
       
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    6. Bambam0
      Cool

      Bambam0 Member Podcast Patron Benefactor

      Tinnitus Since:
      2/2018
      Cause of Tinnitus:
      Drums
      They'd sure raise more $$ if people knew it worked!
       
      • Agree Agree x 1
    7. 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
      This community is also relentless about bothering public-facing people of these hearing loss treatment organizations. She's new. She'll get burned. She'll learn.
       
    8. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Did you ask what the patient receiving the drug had to do to obtain compassionate use? I mean to get approved for it?
       
      • Good Question Good Question x 3
    9. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Can anyone clarify if the compassionate use tinnitus sufferer was in the initial trial? Or if there’s been any follow up on them?
       
      • Good Question Good Question x 1
    10. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      What’s the email address you contacted her by?
       
      • Good Question Good Question x 2
    11. Franci003

      Franci003 Member

      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Unknown
      Hey Brian! The email I have for her is info@Houghear.org and her name is Ashley Everett. Try searching Google her name to see if anything comes up. She said she believes this will help all types of hearing loss & tinnitus including auditory neuropathies etc but I suppose we just gotta wait and see. They're waiting to do trials she said. I think if all these companies could already just start the human clinical trials, we'd get this ball rolling very soon.
       
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    12. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Thanks! I am trying to apply for compassionate use, so I want to talk to her and get her advice on it. I will be having my doctor apply pretty soon. Gotta go in and explain this drug to him.

      Yeah I wish they would hurry up, at least the other drugs have Phase 2 results coming out this year. So we will see. This is a big year.

      I think I would be an excellent test candidate for this drug anyways. Fingers crossed.
       
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    13. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      I know it’s anecdotal but I wish we knew more about the tinnitus patient on compassionate use and if the pill is still effective and/or how effective it is.
       
      • Good Question Good Question x 1
    14. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      Dr. Santosh Kesari of the Saint John's Cancer Institute.
       
    15. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Thanks @Gb3. Can you elaborate? Is that the doctor who signed on for the compassionate use application of the tinnitus patient?
       
    16. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      • Informative Informative x 2
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    17. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
    18. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Because Justin was from Hough Ear Institute and they did not have anything to do with this compassionate use patient. If they knew something about the patient's progress, they probably wouldn't be allowed to say it.

      The patient could now be doing poorly for all we know.
       
      • Agree Agree x 1
    19. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      We could email the doctor.
       
    20. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Yes we could. I have no issue bombarding him lol. Here’s his email address: santosh.kesari@providence.org.

      I’m sending an email now.
       
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    21. 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
      We could stop blowing up the inboxes of people at Hough...
       
      • Agree Agree x 4
    22. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Why? What is there to lose at this point?
       
    23. 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
      It takes a few people getting too aggressive with bombarding emails for them to get cut off along with the entire community. It's better to work through official channels / events / forums and structure communications in a formal manner. Everyone benefits long term that way.

      I see you're new to tinnitus. So, I'll catch you up. This is a really tough community to make happy, so tough that it probably shoots itself in the foot more often than not.
       
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    24. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      The doctor in question doesn’t work at Hough.
       
    25. 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
      Doesn't matter. This is almost worse.
       
    26. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      I contacted Dr. Santosh Kesari of the Saint John's Cancer Institute to make an appointment.

      Gonna do a virtual call with him and see if he can apply for the compassionate use on my behalf. This doctor seems top tier in his field.

      I’ll keep this thread updated.
       
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    27. SB1981

      SB1981 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Multifactorial
      You make this statement regarding the community. I’m confused as to how they differentiate people from this community, presumably you’re speaking of Tinnitus Talk, from the general public? Is everyone identifying as being from Tinnitus Talk in their emails? Just because people aren’t on Tinnitus Talk doesn’t mean they aren’t sending emails regarding the same things. If they don’t seek out support forums they are probably even more likely to choose direct contact with an individual or entity.

      When someone is suffering severely it’s difficult to sit around and wait for answers from these certain channels you speak of. In addition asking questions on this board, they will often go unanswered, especially if they are redundant. But again when you’re suffering severely who wants to go dig through a 300-page thread, read a research paper, run through the entire news history of a company online for the answers they are looking for?

      When you speak of the community in regard to the difficulty in making members happy I know what you mean. However, tinnitus has long been inundated with snake oil so the community is very skeptical and untrusting. Yeah it sucks, but it is what it is.

      I say all this as someone who has never emailed a researcher myself except to inquire about becoming a trial participant. Still I can empathize with those who send these messages.

      The lack of empathy and constant blunt criticism or outright attacks on here are disconcerting as a support community. You stick to the Research News section pretty much and that may speak to your approach to things, but you’ve been harping on this quite a bit now with little consideration of the other side of the coin.

      If certain members of this community want others to stop emailing researchers, then knowledgeable posters directly addressing questions that constantly get brought up, amongst other things, would be an avenue to do so. I don’t think airing these frustrations constantly is doing much. As you can see people scroll right past your gripes and email away.
       
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    28. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      Why is that almost worse? This is a doctor. It is their job to consult with patients.

      I disagreed with people contacting researchers about trials because they can’t really even discuss outcomes until the trial is completed.
       
    29. Piney

      Piney Member

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Shingles virus
      How are people going to get access to the drug without contacting the doctor who has it?
       
      • Agree Agree x 1
    30. ThomasF
      Creative

      ThomasF Member

      Location:
      Florida
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Probably loud music
      I wish you the best.
       
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