/ Register

  1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

good news

Discussion in 'Your Living Room' started by Mac, Jun 25, 2019.

  1. Jun 25, 2019 #1
    Mac

    Mac Active Member

    353
    58
    28
    Oct 23, 2017
    Last edited: Jun 25, 2019
    • Like Like x 5
    • Fistbump/thanks Fistbump/thanks x 2
  2. Jun 25, 2019 #2
    zotjen

    zotjen Member

    183
    8
    18
    May 12, 2014
    This is very good news. What are the next steps for this? Do they do another trial with even more participants?
     
  3. Jun 25, 2019 #3
    California Sun

    California Sun Active Member

    369
    71
    28
    May 23, 2019
    It at least gives us all some hope that work is finally being done to find something that might help us.
     
  4. Jun 25, 2019 #4
    Irishstu

    Irishstu Member

    89
    18
    8
    Apr 28, 2019
    Hi Mac. Great news indeed! Did your symptoms all return after you completed Phase I? Or did you have sustained improvement? Also, did you get improvement in all areas ie. lower tinnitus, less aural fullness, less vertigo and improved hearing or just some of these? Thanks.
     
  5. Jun 25, 2019 #5
    Mac

    Mac Active Member

    353
    58
    28
    Oct 23, 2017
    Zotjen,

    Personally... I think the focus should be - how do we put the full court press on the FDA to get this approved asap?

    This is not a cure. I know...I took it. It works like a Excedrin does for your headache. It works while you take it. It helps with symptoms. It helps a lot to be honest... But it will not stop future headaches.

    My point is... even if you get in the trial you will still suffer from MM. It will only help you while you are on it (if you don't get the placebo) and your underlying symptoms will return weeks or months later.

    That is why it is important that we coordinate together as a group and get this product approved asap so that it is on the shelf every time you need it...make sense?

    So how do we do that? We immediately start bombarding the FDA with letters and petitions to get this drug fast tracked through Phase 3. Tell them your story...How this disease has affected you and your family. I have written many letters to the FDA. They get your letter. They read it. They even write back to you.

    I will get mine out this weekend. We have to pressure them. Otherwise they will continue to care less about us and our disease most people have never heard of.


    Hope everyone has a great day.

    mac
     
    • Like Like x 2
  6. Jun 26, 2019 #6
    Dnrpn

    Dnrpn Member

    55
    1
    8
    May 11, 2019
    Canada
    Can you share the mailing address or email that you are sending your letters to? Thanks!
     
  7. Jun 26, 2019 #7
    Jimii

    Jimii Member

    111
    8
    18
    Apr 10, 2019
    Mac,

    At the end of the trial they told you what you were getting, placebo vs. real drug?
    Thanks for the info.

    Jim
     
  8. Jun 26, 2019 #8
    Onedayatatime

    Onedayatatime Active Member

    372
    74
    28
    Nov 22, 2016
    It appears this new drug addresses hearing loss. I see nothing about the other Menieres symptoms like vertigo
     
  9. Jun 26, 2019 #9
    Mac

    Mac Active Member

    353
    58
    28
    Oct 23, 2017
    Dnprn,

    Here is the address. In the past I have asked close family members and friends to write as well. Go get them!

    Food and Drug Administration
    10903 New Hampshire Ave.
    Silver Spring, MD 20993-0002
    attn// Norman E. “Ned” Sharpless, M.D (acting commissioner)



    Jim,

    They didn't need to tell me. I was 100 percent on it for phase 1 and I definitely got the Placebo in Phase 2.

    Hope that helps.


    Mac
     
  10. Jun 26, 2019 #10
    California Sun

    California Sun Active Member

    369
    71
    28
    May 23, 2019
    Mac, thank you for posting the address. I will write that letter and get it in the mail within the next few days.

    Which of your symptoms did the drug improve?
     
  11. Jun 26, 2019 #11
    EmilyP

    EmilyP Member

    63
    9
    8
    Jan 6, 2019
    Florida
    Oh. thank you thank you thank you!!! I will write my letter today!!!!
     
  12. Jun 26, 2019 #12
    California Sun

    California Sun Active Member

    369
    71
    28
    May 23, 2019
    I posted this information on another Meniere's support board I visit occasionally, along with a link to this site so whoever sees my post can read about it here, also referred them to the Soundex site so they can read about it there. That board doesn't get much action but even if a few people see my post and choose to write the FDA, it will help the cause.

    Just a thought...I am not on any social media sites but is there any way that those who are can get the word out that way? We need to reach as many people as we can.
     
  13. Jun 27, 2019 #13
    EmilyP

    EmilyP Member

    63
    9
    8
    Jan 6, 2019
    Florida
    Cal. Sun,
    I posted the information on my facebook page. Both the info about The Hough
    Institute and Soundex. Yes, I agree as many people we can get to become aware of this awful disease and other ear issues.
     
    • Fistbump/thanks Fistbump/thanks x 1
  14. Jun 29, 2019 #14
    bob_

    bob_ New Member

    26
    8
    3
    Oct 21, 2018
    The FDA site on fast-tracking says "Fast Track designation must be requested by the drug company." @Mac do you know whether Sound Pharmaceuticals has requested this? Should folks reach out to them as well?
     
  15. Jul 1, 2019 #15
    Mac

    Mac Active Member

    353
    58
    28
    Oct 23, 2017
    Focus on the FDA.

    Sound Pharma is run by a smart crew...They will be shooting for fast track without any help from us. They know the deal with orphan diseases.

    Thanks for your help Bob - every letter to the FDA will helps our cause!!
     
  16. Jul 15, 2019 #16
    Mac

    Mac Active Member

    353
    58
    28
    Oct 23, 2017
    Hearing-loss drugmaker Sound Pharmaceuticals posts strong clinical results, eyes an IPO

    My boy Dr. Kil is making it happen!!!

    Now it's our turn.

    There is an old quote I think applies to this situation... "Action is the antidote to despair"

    We can sit back and wait for things to happen in our lives or we can kick down the damn door and make it happen.

    We need to let the FDA know that we are out here and we need these drugs approved. Take some time this week to write a letter to the FDA and tell them your story. Every letter helps folks!!


    Have a great day.

    Mac
     
  17. Jul 15, 2019 #17
    Irishstu

    Irishstu Member

    89
    18
    8
    Apr 28, 2019
    Excellent News Mac! I hope they make a big success of their IPO (i may even try and buy a few shares:)). Their Company has the potential to help a huge amount of people so i hope they are successful. Thanks for the update.
     
    • Like Like x 1
    • Fistbump/thanks Fistbump/thanks x 1

Share This Page

Welcome to our site! Please take a moment and Register today!