SF0034 — E-Mails to the White House?

Discussion in 'Awareness & Fundraising' started by Penate, Dec 9, 2015.

tinnitus forum
    1. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      Hi everybody,

      I just talked to the Prof. Thanos Tzounopoulos. He's the one who's trying to run a clinical trial for the SF0034. He told me he's only waiting for the government to start a trial. I sent thousands of emails to the White House.

      If everybody on this forum did the same thing, maybe they would do something about it.

      There is nothing to lose.

      Please let's get together and do something about this. Thank you.
       
      • Like Like x 5
    2. no life

      no life Member

      I think this is a great idea.

      Can you put a link for the email address I can send it to?
       
    3. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      You can Google contact White House. All information is there. Thank you.
       
    4. GrosBalou
      Nerdy

      GrosBalou Member Benefactor

      Location:
      France
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Inner ear barotrauma (diving)
      Hello Penate,

      This trial would only take place in America? Also, do you know if it would be dedicated to epilepsy? Or both epilepsy and tinnitus?
       
    5. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      Thanos... Thanos Tzounopoulos?

      Doesn't that doctor live in New Zealand?
       
      • Funny Funny x 1
    6. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      I don't know the details about the trial but because just spoke to him about five minutes and I was asking how the pill is going to work. He's going to send me an email with all the details. Just the trial is only going to be here in America and right now all the paperwork is in the hands of SciFluor, waiting for the government's approval for human trial.
       
      • Like Like x 1
    7. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      OK so let's go. Everybody help Prof. Tzounopoulos make this happen.
       
      • Like Like x 2
    8. DebInAustralia

      DebInAustralia Member Benefactor Team Research

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Wouldn't it be better to write an email that everyone can possibly add their name to electronically?
       
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    9. Bertman
      No Mood

      Bertman Member Benefactor

      Location:
      canada
      Tinnitus Since:
      07/2015
      Cause of Tinnitus:
      concert
      I'd be up to sign a petition, even though I don't live in the United States.
       
      • Agree Agree x 2
    10. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Should we make a petition on change.org or just send an email? Tell us the email address and text and I will do it pleasantly.
       
    11. monacco

      monacco Member

      Location:
      forte Antoine .monaco
      Tinnitus Since:
      29/09/2015
      Cause of Tinnitus:
      anknown
      10 000 people are on this forum, each one should send them an email.
       
    12. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
    13. Dave111
      Bashful

      Dave111 Member

      Location:
      Nederland
      Tinnitus Since:
      12/2013 worse 2/2015
      Cause of Tinnitus:
      Emotional abuse + recording guitar. Songname: Never give up -_-
      Maybe someone can write a letter and we all can copy paste.
       
      • Like Like x 2
    14. monacco

      monacco Member

      Location:
      forte Antoine .monaco
      Tinnitus Since:
      29/09/2015
      Cause of Tinnitus:
      anknown
      Good idea.
       
    15. Sailboardman
      Frustrated

      Sailboardman Member Benefactor

      Location:
      Florida
      Tinnitus Since:
      04/21/2014
      Cause of Tinnitus:
      Sensorineural hearing loss right ear.
      Any literary scholars, or US government officials out there, able to craft a properly, penned letter?
       
    16. Bertman
      No Mood

      Bertman Member Benefactor

      Location:
      canada
      Tinnitus Since:
      07/2015
      Cause of Tinnitus:
      concert
      It would probably help to have people with epilepsy also email/petition or whatever as that is what this drug is actually going to be trialled for.

      @Penate Please let us know when you receive that email from Prof. Tzounopoulos!
       
      • Agree Agree x 3
    17. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      I just spoke to SciFluor rep and they told me they need at least 2 years to star the trial, that's crazy, we need to start sending emails to SciFluor and to the government right away.

      Please it is the only way we can help Prof. Tzounopoulos.
       
    18. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      Wow... Depressing... 2 years??
       
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    19. Bertman
      No Mood

      Bertman Member Benefactor

      Location:
      canada
      Tinnitus Since:
      07/2015
      Cause of Tinnitus:
      concert
      Do you know why 2 years? Only for the government issue or is there something else they have to tend to first? Cause that seems rather odd that the government would say hold off for a couple years for no reason.
       
    20. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      Penate Can you please paste his letter in this forum so we can read it?
       
    21. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      Hello Dubbyman,

      I'm sorry but I have no letter.

      I spoke with him on the phone and I'm expecting an email from him for explain how the medication is going to work.

      I asked him when the the trial is going to start and he told me he doesn't know.

      That's why I called the SciFluor rep and they told me they need at least two years to start a trial in humans.

      I sent the email back to him explain everything and I'm waiting for his response.

      The guy from the SciFluor was very stupid, very rude to me on the phone.

      The thing is they are waiting for the money from the government to start a trial.

      That's why they say at least two years.

      But if we start sending emails to the White House, they may be able to do something but we have to do it together.
       
      • Like Like x 1
    22. JohnK
      Lonely

      JohnK Member

      Location:
      San Francisco
      Tinnitus Since:
      10/26/2015
      Cause of Tinnitus:
      Who knows?
      Maybe he means 2 years before they get to the trial where we could participate (a Phase II at least)

      From what I've learned following this forum (and absorbing the wisdom of @attheedgeofscience through osmosis), the first phase of a trial (Phase I) is conducted only on healthy volunteers, to make sure they don't keel over and die. Then and only then can we do a Phase II.

      And I think it has to pass an ethics review board first.
       
    23. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Didn't I say in another thread that SF0034 is nowhere near human trials???!!!
      Straight from the horses mouth people, straight from the horses mouth!

      Petition is a better way!
       
    24. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      I'm sorry, this is a thread of paramount importance, but I can't help laughing at this hillarious quote above. Oh, God, it's good to have a laugh once in a while in such tensed times.

      My opinion is that if we send separately 10000 e-mails, they will get thrown to the garbage, one by one, as they don't have much of an impact taken separately.

      We should do something signed by as many people as we can. Of course "10000 signatures" is an unrealistic number, Markku said that many of those e-mail addresses are dead now. 1000 signatures would be great, but even that goal is unrealistic. A few hundred signatures should get some attention.
       
    25. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Someone should take leadership - write an email format and give all the info needed to understand even why we want to send this email...

      Because I don't care to read every post... and I don't really get WHY we should send the email in the first place...

      I understand we want to get rid of tinnitus... but why would this email make a difference and to what?

      SF0034 is now only being studied in relation to preventing tinnitus - not curing it... so we need more info on this... Thread starter @Penate please organise your idea because like this it isn't going to have much effect and die out fast.

      How do you even send 1000 emails? and what is the point sending 1000 emails from 1 address... you'll just look like a spam email...

      It's not going to work like this...

      http://www.sciencedaily.com/releases/2015/06/150623180317.htm
       
    26. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Who would be a better leader than ATEOS?
      @attheedgeofscience, please come and enlight us in this matter, we are suffering in the darkness here
       
      • Agree Agree x 2
    27. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      "SciFluor now plans to start FDA trials with SF0034 and see if it is safe and effective in people. Treating epilepsy is the primary goal, but tinnitus can be similarly debilitating, and sufferers would be thrilled to have a decent treatment."
       
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    28. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      I hate to be so negative but unfortunately negativity is just another word for realist. You can send as many emails as you want to the careless suits in Washington. It won't make a bit of difference. It's not them suffering. They don't have T, or H, or M, or whatever else there is out there thats in the darkness of the night when it comes to awareness. 12 million of us in america have severe T. That's 12 million out of 350 million in the country. It's not a big enough statistic for any of those heartless assholes to give a fuck. I'm sorry but history tells us that the only way we can really change things is through violence and bloodshed. Ever watch Xmen? Professor Xavior was always the calm one and promoted peace when humanity wanted to destroy his kind. Magneto fought back against humanity with blunt force, making them feel the same fear they imposed on the mutants to begin with. Now is Magneto's way the right way? No but sadly....it was MORE effective!
       
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    29. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Ok. So a couple of comments here:
      • A small part of the work @Team Trobalt did was to track down information from reliable sources. Reliable sources would start with researchers and end with CEOs of pharma companies. CEOs, however, generally do not let their e-mail addresses lying around on the local street corner so to speak. And even if an e-mail was found, a response from the CEO would not be guaranteed. At this point @Team Trobalt has tracked down the e-mail addresses of the CEOs of around 10 out of the 15 otology pharma companies involved in inner ear disorders. One of these is in fact SciFluor Life Sciences. I have had several exchanges with Dr. Amirana of SciFluor (as late as October, this year - see this thread: www.tinnitustalk.com/threads/scifluor-receives-us-patent-for-kcnq2-3-activator-to-treat-epilepsy-and-neurological-disorders.7743). In addition, I have also shared the very latest company presentation of SciFluor which includes the all important clinical trial timeline. In addition, another member of @Team Trobalt - as well as myself - have had both phone calls and e-mail follow-up with Prof. Tzounopoulos. I am not going to share any additional information here on all at - because by reading through the relevant threads, you will all be briefed to the maximum extent. Suffice to say that I do not think a fast track of SF0034 is likely: first of all it is not even certain if SF0034 will be indicated for tinnitus (but see comments further down in relation to the slide).
      • There are two ways to get things done in this world: the direct way - and - the indirect way. One of the things @Team Trobalt has done to a much larger extent than most people would be aware of is to build alliances and work "deals" behind-the-scenes. Speaking of the White House, one of the things I personally looked into around this time last year was a tracking down a person who happens to be a friend of President George W. Bush and/but who also happened to be on the board of directors of arguably the most powerful non-profit organization for veterans - the "Wounded Warrior Project" and which has +3 million followers on Facebook (3M followers is equivalent to the size of the smaller nations in Europe). What we wanted to achieve was getting an update of the scientific paper by Prof. Moore published on their forum (www.facebook.com/wwp). The reason is simple: veterans suffer more from tinnitus than any other disability. You would therefore think this would be an easy task (i.e. getting the paper released on the newsfeed) given the overlap between our and their goals - but no. The source we had (i.e. the friend of Pres. Bush) was very helpful and supplied us with a contact (the communication manager of the WWP): she did respond to our source's request, but did not follow up with us (once we made our inquiry clear to her). Later on, I managed to track down the e-mail of the CEO of the WWP (which was seriously difficult - much more than any other e-mail address I have had to crack or track down): also no reply. Recently, the WWP released the results of a questionnaire (which I will attach with this update): to my surprise the word "tinnitus" was not even mentioned once. Unbelievable given that tinnitus equals the single most burdening item on the disability payment list for veterans of the armed forces.
      I have now provided some insights into how difficult advocacy can be, and, for that reason, I can also say that the method employed here in this thread - contacting the WH - is futile. You will need to come up with some more clever ways to make an impact. Finding the right people and connections is the first step. For instance, @Team Trobalt has a lawyer to help us. And we went very far to make things happen (even if we did not always succeed).

      Regarding SF0034 I can share the following slide from the company presentation of SciFluor:

      upload_2015-12-13_21-20-54.png

      "Orphan" drug means that the condition treated is relatively rare and no satisfactory treatment exists. I therefore do not think that Phase 1B is aimed at tinnitus, and, hence I wonder if tinnitus is even part of the clinical trial programme (just my interpretation, of course).

      May the force be with you - you will need it (and more) to be successful, I am afraid. For instance, placing this thread in the correct forum folder would be a first good start (this is the research section, not advocacy and fundraising...).

      attheedgeofscience
      13/DEC/2015.
       

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    30. Silvio Sabo
      Pooptoast

      Silvio Sabo Member Benefactor

      Location:
      Gothenburg, Sweden
      Tinnitus Since:
      05/2006
      Cause of Tinnitus:
      Noise - I think
      Bloodshed would mean more suffering. Is that really effective? To end suffering we should.... make more people suffer...?!
       

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