"Missed Opportunities" - A Message of Awareness by attheedgeofscience

Discussion in 'Awareness & Fundraising' started by attheedgeofscience, Dec 29, 2015.

tinnitus forum
    1. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      A group of members on TinnitusTalk have asked me to write a message of awareness on the pre-clinical trial compound SF0034 - a compound by SciFluor Life Sciences and which may have the ability to treat tinnitus. In order to write such a message of awareness, I will need to go back to around this time last year - the 29th of November, 2014 to be exact - when I received an e-mail from the well known tinnitus researcher, Prof. Tzounopoulos. The response from him was part of a series of responses I received from key individuals within the field of tinnitus research as a consequence of my outreach in order to obtain the pharmacological mechanism of action of Retigabine in relation to tinnitus. This was all part of the early work which was later to become known as the "Team Trobalt" initiative.

      Prof. Tzounopoulos was unfortunately not able to help with the MoA, but his response did nevertheless contain a surprise - "an unexpected and positive development" one could say:
      At the time, I had no idea that the "activator" he was referring to was SF0034 - a compound which is part of the clinical trial programme of SciFluor Life Sciences - and - which is more potent and less toxic than Retigabine (for the readers who are unaware: SF0034 is a derivative of Retigabine - meaning they are chemically similar). Indeed, the manuscript Prof. Tzounopoulos referred to in his e-mail was released earlier on this summer - the link can be found below this message. But let's go back just one step: back to the beginning of the period just before Team Trobalt was formed.

      Team Trobalt had intentions - on behalf of the tinnitus community - to attempt to prove in a clinical setting the beneficial results that have been observed by some members (here on the forum) who had been taking Retigabine. For that task we needed the help of professionals within the tinnitus community. A natural place to start would be the tinnitus organizations: surely they would have a self-interest in pursuing such an avenue, right? Well, let us just say that some of us have become wiser since then. Indeed, a clue to this is that the people who actually ended up helping us were researchers from the Tinnitus Research Initiative (TRI) - a link to their recent manuscript will follow below this message.

      Another entity that should have a self-interest in tackling tinnitus would be the US government. According to the US Department of Veteran Affairs, disability payments related to tinnitus is expected amount to some three billion dollars annually by 2017 (more than any other veteran disability in fact). Suppose just one percent of that amount - i.e. 30 million dollars - had been put aside every year, for ten years back in time, there would now be an accumulated 300 million dollars: money which could be have been spent on research. Looking at it from that angle is of course a very conservative one. The real way to address it is to say: even if we were to put aside ten times that amount every year for 10 years - i.e. 10 x 300 million dollars - with the knowledge that a cure could be found, we would then be saving ourselves more than three billion dollars each and every year going forward by 2017 (in rough terms). Put in very simplistic terms: there should be a much higher self-incentive for governments to find a cure for tinnitus. Because... it pays off!

      Earlier this year, we saw the termination of the QUIET-1 study by Autifony Therapeutics. A real blow to the tinnitus community. There is however another pharma company which is still present: SciFluor Life Science with their SF0034 compound. It is unclear to me if SF0034 will be trialed and indeed marketed for tinnitus. However, company material from SciFluor Life Sciences suggest that tinnitus may be in scope:

      upload_2015-12-29_17-44-51.png

      upload_2015-12-29_17-46-34.png

      People reading this may wonder why I have titled my post "Missed Opportunities" - the answer will come as a conclusion to this message. Back in 2004, a patent paper was released on Retigabine. On page 3, item [20] it was noted that Retigabine may have potential to treat tinnitus. Now that's 11 years ago...! How do governments, tinnitus organizations, doctors, researchers, and so on "waste" some 10 years? Of course they didn't entirely - we are seeing signs of progress, but, as Team Trobalt have shown during the span of one year, and with very very limited resources, so much more could have been achieved!

      Feel free to rate, share or comment on Facebook:



      Lastly, best wishes to everyone for 2016.

      attheedgeofscience
      29/DEC/2015.


      Important Links:

      US Government Spending on Tinnitus:
      www.gpo.gov/fdsys/pkg/CRPT-113hrpt247/html/CRPT-113hrpt247.htm

      Research Paper on SF0034:
      www.ncbi.nlm.nih.gov/pubmed/26063916

      Research Paper by TRI:
      www.researchgate.net/publication/284728150_Potassium_channels_as_promising_new_targets_for_pharmacologic_treatment_of_tinnitus_Can_internet-based_crowd_sensing_initiated_by_patients_speed_up_the_transition_from_bench_to_bedside

      Patent Paper on Retigabine (from 2004) - see attachment file named "EP14077682A (Retigabine).pdf"
       

      Attached Files:

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    2. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Trauma + NIHL
      Thanks for your job ! TT is for me one think positive in globalization. I wanted to cry when I read the article about "crowd sensing". Brave guys from the Team Trobalt ! Is the experience continues ? If I try Trobalt too, at who I have to send my reports ?
      Thanks !
      The fight continues
       
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    3. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      I feel like tinnitus is the forgotten fraternal twin of epilepsy when it comes to research. Nice to know some progress is being made, even if it's only tangential to the research to find a cure or safer treatment for epilepsy.

      Thank you so much for your enlightening post. I feel a tiny stirring of hope that perhaps this affliction will not torment me the rest of my days.

      Best wishes to you in 2016, as well.
       
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    4. Dutchy
      Not worthy

      Dutchy Member Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Neuronmodulation suggests noise induced?
      I think awareness is spreading though,more people that have this condition should speak up about it.
      This is something we can fight and it might help with other neural disorders as well.
       
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    5. virginia davis

      virginia davis Member

      Tinnitus Since:
      04/01/2003
      I am researching this as I have had it for a couple of years and there seems to be no Ear specialists that can help or ever understand it. I have learned that working on the pressure points in my jaws and neck do help and I never realized i had problems with my jaws. I have read that so many people suffer from this and as a health professional, I did not know this. I wont stop trying until i find something that helps and pray for all those who suffer from this horrible diagnosis.
       
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    6. newarrior

      newarrior Member

      Tinnitus Since:
      12/1996
      I am going to call the drug developer in regards to future trials. So many would benefit from cures: veterans, the USA mililtary, the USA gov't, the average sufferer, drug companies, doctors etc etc...Wasted time wasted cash and all we have are habituation therapies and hearing aids..So goddam primitive so goddam behind the times..bastards all..Shared to Facebook
       
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    7. tshapiro

      tshapiro Member Benefactor

      Location:
      Jacksonville Florida
      Tinnitus Since:
      10/2014
      Shared... thanks for the continued good work!
       
    8. Verne

      Verne Member Benefactor

      Location:
      Palo Alto
      Tinnitus Since:
      3/15/2011
      Cause of Tinnitus:
      loud noise
      Great article ATEOS. Now if we can find a news outlet to pick up and run with this important under reported story.
       
      • Agree Agree x 1
    9. Dutchy
      Not worthy

      Dutchy Member Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Neuronmodulation suggests noise induced?
    10. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Update on Campaign Statistics So Far...
      • The video has been viewed 16,000 times at this point
      • The post itself (the one at the top in this thread, that is) has been read more than 7,000 times
      • The ratings for the post on Facebook (i.e. likes and shares) have only been exceeded by one other post (ever)
      • The TinnitusTalk forum has at that this point in time almost 150,000 messages; no other post has as many ratings as the message of awareness (91 in total at this point)
      Those are the numbers! Thanks to those who sponsored the campaign and to those who partook in the sharing the message.

      attheedgeofscience
      31/DEC/2015.
       
      • Like Like x 4
    11. monacco

      monacco Member

      Location:
      forte Antoine .monaco
      Tinnitus Since:
      29/09/2015
      Cause of Tinnitus:
      anknown
      16000 times viewed in only two days! it seems that people respond to video awareness and they don't like reading long messages.
       
    12. Frances Lynn
      Question it

      Frances Lynn Member Benefactor

      Location:
      Dallas, TX
      Tinnitus Since:
      04/23/2015
      Cause of Tinnitus:
      loud music and alarms at formerjob
      I sent an email to SciFluor and got a response that said it would be a minimum of two years before they enroll patients like me in any trials.

      I responded asking if I could be on an email list for updates but was told only that he would save my email.

      I am feeling a bit more hope and want to thank ATEOS for his time and effort in getting the word out regarding the latest in research.

      I hope the trials will be worldwide so all of us that are willing and able can have a chance to participate.
       
      • Like Like x 2
    13. Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base

      missed-opportunities-sf0034-retigabine-awareness-campaign-tinnitus-talk.png
       
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    14. Aussie Lea
      Dramaqueen

      Aussie Lea Member

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      01/09/2013
      Unreal job everyone involved, great! Congratulations on spreading the message. Now we need to move the governments which is difficult. Australia is in the stone age in regard to tinnitus!
       
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    15. monacco

      monacco Member

      Location:
      forte Antoine .monaco
      Tinnitus Since:
      29/09/2015
      Cause of Tinnitus:
      anknown
      Good summary (y)
       
    16. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Maybe we can do more here!
       
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    17. jss
      No Mood

      jss Member Benefactor

      Location:
      USA
      Tinnitus Since:
      June 2013
      @attheedgeofscience,

      You should be commended for all your great work. The more members that join here the more chances of promotion and opportunities for realistic fundraising.

      You're an inspiration to this small but growing community.

      God Bless!
       
    18. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      Lol my mother thinks I should write the president (both the current and future) and keep writing and writing until i get their attention with persistence. Starting to wonder if that idea is not that crazy.
       
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    19. Tamika
      No Mood

      Tamika Member Benefactor Team Awareness

      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      One loud indoor concert
      Very true! No education, no warnings, no regulation of sound levels.
       
    20. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      IMPORTANT INFORMATION FOR THOSE INTERESTED IN RESEARCH

      It has come to my attention that the research paper I have earlier mentioned (pertaining to SF0034) has now been released in full text copy for free. I am therefore attaching it here with this post. The conclusion of the paper reads in part:

      "In light of the risks associated with these alternative treatments, we propose that SF0034, which shows an improved efficacy and safety profile, has the potential to be an effective clinical option for patients with mild or severe (incapacitating) tinnitus."

      I should mention, however, that research papers should be read in full (or at least the conclusion should be read in full).
       

      Attached Files:

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    21. RaZaH
      Not amused

      RaZaH Member Benefactor Team Tech

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      WOW!

      This could be huge !

      This...however is scary and something I am very concerned about in relation to Trobalt.

      Moreover, a form of dominant deafness arises from impaired function of KCNQ4 (Kharkovets et al., 2000), so nonspecific opening of these channels may have unwanted side effects on hearing.

      Seems that KCNQ4 is the same modulator that causes urinary retention.
      SF0034 however does not have this modulator.

      Any predictions as to when this might be marketed or if marketed at all ?
       
      • Like Like x 1
    22. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      For those who wish to partake in awareness, there is now a FB-post related to SF0034 available and which can be rated or commented on. See embedded post below.

       
      • Like Like x 5
    23. Beste
      Disappointed

      Beste Member

      Tinnitus Since:
      02/16/2016
      Cause of Tinnitus:
      Benzo/Clonazepam, Stress
      I want to thank everyone who took a part of this campaign. It is so sad to know thay we could have had an efficient treatment ot even a cure by now if these studies could have taken place 20 years ago.

      I do know we will have something soon.
       

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