American Tinnitus Association's Board Chair on NBC TODAY: Is This the Right Message to Send Out?

Discussion in 'Awareness & Fundraising' started by Ed209, Nov 3, 2018.

    1. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I had knocked the ATA for non judgement in discussing the severity of tinnitus, but in fairness the ATA does promote awareness in complete and safe medical treatment for those with tinnitus. Non profit by-laws in the USA has regulations on financially aiding other non profits. With this there isn't much self interests involved between one non profit and another.

      Excellent articles within link include:
      ATA educates American Academy of Otolaryngology
      Ototoxicity Part 1 & 2.

      https://www.ata.org/node
       
    2. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Bildschirmfoto 2018-11-05 um 17.16.25.png
       
      • Funny Funny x 4
      • Agree Agree x 1
    3. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      Agreed. @David has listened to us. Respect where respect is due. Good job emphasising the need for a cure.

      However I still think he lacks conviction in putting the message across about the severity of some people’s suffering. Dr. Hilary was more forthcoming about suicide and tinnitus.

      As far as I’m concerned the two are sadly inextricably linked. It’s all been said before but until the BTA and ATA start representing the very worst sufferers and the deeply disturbing torment of constant head noise, nothing will ever change.
       
      • Agree Agree x 4
      • Hug Hug x 2
      • Like Like x 1
    4. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Social media... Together we have a voice.

      The tinnitus community needs to wake up to this.
       
      • Agree Agree x 2
    5. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Things certainly came together on Saturday. I noticed you are acknowledging researchers in a positive way. :cat:

      We've heard from @Steve and @Hazel that researchers can become wary if challenged too aggressively.

      Heaven knows we need some good minds on this.

      TC
       
      • Agree Agree x 3
    6. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      @Greg Sacramento,

      That's not the ATA that I talked to. What changed with them?

      Last year they told me they only fund research.

      When I asked for advice on my tinnitus, well I'm still waiting for them to come back with information.

      They offered no medical help medical, I'm very glad I found Tinnitus Talk.
       
      • Like Like x 3
      • Agree Agree x 1
    7. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @MBH When I first got tinnitus from ear syringing several years ago I called a representative of the ATA in a small town in Northern California. This representative lived in the same small town as someone who posted in this thread. I did not expect that he would have the skilled knowledge to help me and I wasn't looking for that. I called just to have someone hold my hand.

      I more recently talked to an ATA rep and we talked about a few things after I told him a little about myself. We discussed that the medical community is not taking care of those with tinnitus well enough. We discussed medical procedures - MRIs, ear cleaning and dental where care givers don't have tinnitus understanding. The ATA is doing awareness in this area. He said that they don't have the funding to hire doctors that know everything about tinnitus and physical tinnitus. Physical may be part of why we get tinnitus and it's complicated stuff.

      Not long ago, I met with a team of local physical tinnitus researchers for a day. That was the only meeting that I attended because of my severe conditions. Discussed during the meeting that I did attend is that most tinnitus is caused by something physical. In brief, besides accumulation of noise exposure, injury and illness can weaken structures of the ears. Then either by more noise exposure, more injury or dental, tinnitus happens.

      Two big connections in getting tinnitus: One is the neck/jaw/posture and the other is in this link.
      http://www.tmjhealth.com/WebPages/TheMysteriousJoint.html

      There will never be one cure for tinnitus. As far as the physical causes they are known with few exceptions. Most universities have available research funds, but they want to have viable studies to fund. I place my tinnitus awareness in three areas: Proper care and proper procedures for those with tinnitus. Helping those that can't afford treatment. Tinnitus awareness of cause.
       
      • Like Like x 2
    8. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      • Winner Winner x 4
      • Informative Informative x 2
    9. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Good news everyone.

      I approached the NBC journalist who wrote the article for NBC TODAY with a message explaining the reactions to the article on Tinnitus Talk. I also explained how a significant proportion of our membership is significantly impacted by tinnitus in various areas of life, and backed this up with some numbers from our most recent survey; Support Matters - How Are Tinnitus and Social Support Interlinked.

      She has now added some of our input to the original article. (y)

      I'd like to thank @Hazel, @Ed209, @Samantha R, @TuxedoCat, @Starthrower, @derpytia and everyone else in this thread for their activism in this matter and giving me pointers.
       
      • Winner Winner x 15
      • Like Like x 1
      • Agree Agree x 1
    10. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Markku WOW!! Just when I feel defeated in trying to make a voice heard something like this pulls me back.

      Thank you...

      From the revised article:

      Markku Vesala, director of Tinnitus Hub, a UK-based nonprofit with 26,000 registered members, said it's mental impact can be so bad, there is a "dire need" for a cure.

      “A lot of our members suffer considerably and find their quality of life significantly impacted by tinnitus,” Vesala told TODAY in an email.

      “A recent survey we conducted, with nearly 2,000 respondents, shows that over 60 percent of people regularly experience negative moods because of tinnitus, 68 percent find tinnitus has made them more socially withdrawn, and 38 percent find tinnitus has negatively affected their career or work prospects."

      WHAT TO DO IF YOU THINK YOU HAVE TINNITUS

      The first step is to see your doctor if the symptoms are bothering you. Ringing in the ears can be caused by other conditions.

      The doctor will likely examine your ear and provide a standard hearing test. You might then be referred to an audiologist to do further tests and help you manage your symptoms. Though there’s technically no “cure” (but again remember that it’s somewhat common), being able to calm your mental response to tinnitus will greatly improve your quality of life.

      Just as important as seeing a medical doctor is seeking mental health help if you feel overwhelmed. Vesala, for example, helps run Tinnitus Talk, an online support community.

      Editor's note: This article was updated to include comments by Markku Vesala, director of Tinnitus Hub, on Nov. 6.​
       
      • Like Like x 5
      • Agree Agree x 2
      • Winner Winner x 1
    11. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @MBH yes back in about 2006 the ATA took the Research Only aspect.

      They axed a program that helped sufferers get medical attention that was privately funded and gave 10% for administrative costs from the donors own money.

      The ATA soon failed big time back then.
       
      • Like Like x 1
    12. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Awesome work, @Markku. What a legend.
       
      • Agree Agree x 7
    13. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      2lvnz5.jpg
       
      • Winner Winner x 10
      • Funny Funny x 5
      • Agree Agree x 3
    14. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Allan1967

      Tinnitus is a very common condition Allan that has been around for many thousands of years and dates back to the Egyptians, when the first medical account of it was recorded. Most people do habituate and to the point where they hardly hear it, or don't find it too debilitating even on occasions when it might be troublesome. Tinnitus is just one of many medical conditions that cannot be cured at this moment but can be helped with various treatments to enable people to have a better quality of life.

      If a person is also affected with hyperacusis the same applies, for often the symptoms of oversensitivity to sound can be improved with self help or seeking more professional help with a Hearing Therapist or Audiologist trained in the management of tinnitus and hyperacusis.

      I believe it is not the tinnitus community that needs to get its - - - - into gear but rather, it's the people that sit in front their computer daily and constantly moan and groan as to why a cure has not been found. If they didn't put so much emphasis on this and make it their number one priority, I think many would start to feel better about themselves and life. Tinnitus treatment has come a long way and I'm not suggesting that research into it should halt, on the contrary, but constantly bleating and trying to find someone to blame for your woes in life will not achieve anything.

      Michael.

      PS: I speak from a place of experience, for I have tinnitus which can reach very severe levels.
       
      Last edited: Nov 6, 2018
    15. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      You won't see this because you blocked me saying I was not a good person.

      Are you looking in a mirror when you write that?
       
      • Agree Agree x 4
      • Like Like x 1
    16. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Indeed. Which is why you are still making your around-the-clock appearance on TinnitusTalk (despite your habituation claims...)
       
      • Agree Agree x 4
    17. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I think having Dr. Hilary handle such a difficult topic was the right thing to do, if anything it gave more gravity to the situation.
       
      • Agree Agree x 3
      • Helpful Helpful x 1
    18. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      They did axe that program because healthcare was not responding properly with assistance for those that needed care. Instead they started educating healthcare providers on proper and safe treatments for those with tinnitus. The ATA has several articles on their website per educating healthcare about proper and needed care for tinnitus. I will credit them for that.

      I recently posted a link that describes when someone receives tinnitus it should be considered a major injury - ear and brain injury. In the article, one of several that I posted, someone who received tinnitus was quickly admitted into the hospital for a week and then became an outpatient. He received other IV injections other than just prednisone. After that, the patient continued as an outpatient. His severe tinnitus vanished. A full recovery was made.

      Most of the causes of physical tinnitus are known and there many - thousands. Doctors tend not to look for a cause especially if the physical cause is unknown. Doctors will treat condition areas of physical pain. This only attitude needs to be changed - a very important area of awareness. Many of us here suffer and we need the best possible care.

      The neuro company SAGE has stated that they can place multi millions of dollars into research of any neuro condition. They have 550 million dollars in the bank. They have also stated that neuro treatments would have to consist of hospital IV therapy, as pills won't offer cell benefit. Will hospitals give this kind of care to those with a recent onset of tinnitus or with physical tinnitus. Universities that have billions in medical research funds know that many treatments for tinnitus will need involvement of continued IV therapy that would need to be done in a hospital setting.
       
    19. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Seriously threads like this make my blood boil!

      @Ed209,

      I just shared that link with the sister of a New York musician who committed suicide 2 years ago.

      She has just recently organised another fundraiser for ATA in his memory.
      Maybe this will open her eyes!

      They have no shame in taking money raised on someone’s tragedy but fail to even mention a tinnitus suicide as remotely possible.

      This is the message she received after I told her few facts about ATA and their sincerity to find cure:

      Hi Val, we had contacted the ATA regarding questions related to where their money is going as far as research purposes and received the following answer:

      “ATA has a long and rich history of of funding only the best research proposals that we receive. We have a Scientific Advisory Committee (SAC) comprised of researchers from all over the world who are experts in the field who conduct the peer review of the proposals that we receive at ATA and score and recommend for funding only the best research that will fall into one or more paths on our Roadmap to a Cure. The Roadmap was first developed by our SAC in 2005 and updated last year to include a new path (now five paths of research instead of four) to coincide what has been learned over the past decade in tinnitus research. I work directly with the Scientific Advisory Committee and our Chair, Dr. Michael Hoffer, an otolaryngologist at the Univiersity Of Miami who spent the majority of his career working for the military as an otolaryngologist at San Diego Naval Medical Center. He is published in hundreds of papers working on tinnitus with researchers from all over the world. Our research process is as follows:

      1. At the deadline the reviews are assembled at ATA headquarters and logged into the ATA grant application database.
      2. The SAC Chair selected three reviewers for each review and they were contacted to verify they were willing to conduct the proposed reviews.
      3. Information was provided to each Scientific Advisory Committee (SAC) member about the key investigators and the subjects of all the grants and each SAC member had to notify the ATA and the SAC Chair about any conflicts of interest. All reviewers signed the conflict of interest before they were given the applications. Any SAC member who had a conflict of interest (COI) was not given access to any of the COI-related grants or participated in the discussion and scoring of the COI-related application(s).
      4. The designated reviewers for each application was sent the full application along with a review template to fill out. All grants had three reviewers and all reviewers responded on time to their assigned reviews.
      5. The scores from the reviewers were averaged and all the applications were listed in rank order from highest average score to lowest. Any proposal receiving a score of 70 or greater, were designated for discussion at a telephonic SAC meeting to review grants.
      6. The review discussion was led by the SAC Chair and the three reviewers discussed the application and answered questions from all the SAC members. In addition, patient reviewers also provided comments this year to provide information about potential patient impact of the proposal which were read aloud by the SAC Chair during the meeting after the peer review discussion took place. After the discussion was complete for a particular application the SAC members were requested to note their score for the application on a special scoring form.
      7. The SAC members submitted their scores for all discussed applications and those were then averaged to rank order them for presentation to the ATA Board of Directors who made the final funding decisions.

      We also implemented a patient review during this year’s process where a panel of patient reviewers also scored and commented on the proposals so that we could include the possible patient-impact the proposals would have and that was factored into the final decision-making by the Board of Directors.

      We have a restricted account where the funds you raised went directly into. They are separate from our operational funds. If you look on our website at ATA.org you will see that our Board of Directors funded two research proposals this year (at the April 2018 Board of Directors meeting) awarded to Gabriel Corfas, Ph.D., and Sylvie Hebert, Ph.D., both in the second year of their grants which showed extreme promise in the first year in the amount of $50,000 and $49,665 respectively. Your $6,000 was part of that.

      You can see those grants here: https://www.ata.org/research-toward-cure/research-program/current-ata-research

      In addition, you can see all the research we have funded in the past here: https://www.ata.org/research-toward-cure/research-program/past-ata-funded-research

      We publish the results of those studies in our membership magazine, Tinnitus Today. It is part of the agreement that our grant recipients sign when accepting the funds from our organization. If they do not use the entirety of the grant money they return it to us.

      The grant awards for the new grants we funded just went out in June. We conduct a yearly audit which we are in the middle of for this past year and in 13 years there has never been a discrepancy in where we are allocating funds based on how they were raised.

      I hope that this satisfies your concerns about our research grant process and how we conduct it. It is intensive and transparent and models the National Institutes of Health process.”​
       
      • Winner Winner x 2
    20. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Greg Sacramento may I ask where and when you got the above information?

      That information is wrong.

      Not until AFTER their move to become only a research organization. Their mission statement clearly stated this back then. And it failed.

      After that failure it seems they then started back to what you described above.
       
    21. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @valeri, @Ed209,

      Hi Valeri, There are 2 things about your post which are somewhat re-assuring:

      1) The $6,000 that was raised was not co-mingled with operational funds at the ATA and the ATA did not take any administrative or overhead cost from the $6,000, it's all going to a research project.

      2) A patient panel also reviewed the grant applications. This is good sign. ATA may finally be moving to a culture where the tinnitus patient's perspective matters and they are seeking out the patients' input.

      TC
       
      • Like Like x 1
    22. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @valeri, @Ed209, @Starthrower, @Markku,

      The announcement below comes from ATA's Facebook page. It's more than a month old so I would think the 2 major initiatives that are referred to should be announced soon (or who knows, maybe they've already been announced someplace we don't see).

      20258271_1467284700030767_3354897606052182462_n.jpg?_nc_cat=105&_nc_ht=scontent-atl3-1.jpg
      The ATA Board of Directors met at its new Washington DC-region headquarters to assess the organization’s 5-year Strategic Plan and welcome six new directors. During the meeting, the board advanced two new major initiatives that will soon be announced and heard from the National Institute on Deafness and Other Communication Disorders (NIDCD) about their research initiatives and goals within the National Institutes of Health (NIH). ATA works closely with the NIDCD to encourage more researchers and investigators to make application to fund innovative tinnitus research.​
       
      • Like Like x 1
    23. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Starthrower.

      Years ago the ATA had a geographical list of people that you could call. The one that I contacted received calls to his home who lived just north of me. He also had tinnitus. I did not contact him for medical treatment advice. A few years later I could no longer find this person's contact method on their website.

      I'm aware of the ATA geographical location change and their stated reasons for doing so, but other than reading some of their articles, I haven't closely followed their policies until a year and a half ago. @David of the BTA seems to be personal and with ties to other tinnitus associations. More recently I haven't seen the newer director of the ATA verbally understanding to the fact that some have troublesome tinnitus. They may also have serious conditional medical problems.

      I don't see the medical care community changing their attitudes and cost structures to those with tinnitus and associated medical problems without major awareness programs. It's very apparent that doctors don't always consider what drugs and medications may be dangerous to a patient with tinnitus. It's also very apparent that medical care givers of any nature are sometimes giving tinnitus patients treatments or exams without precautions.
       
    24. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      This topic has been pretty well covered already, but there is a nice sentence in the current issue of the Hearing Health Foundation magazine (the Fall 2018 issue, on page 10) that for me helps succinctly sum up why the comment in the NBC Today article about tinnitus typically fading over time is so frustrating:

      “Primary tinnitus, or tinnitus with an unknown cause, of a duration of at least six months is a usually permanent condition with no cure currently available.”​

      I suspect this sentence applies to a good number of us here on Tinnitus Talk.

      https://view.publitas.com/p222-4764/hearing-health-fall-2018-issue/page/10-11
       
      • Like Like x 2
      • Winner Winner x 1
      • Informative Informative x 1
    25. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I'm totally anti ATA and this is bullshit.

      Tinnitus isn't just tinnitus, there's also hyperacusis etc. I've spoken with ATA reps and my takeaway is that they are complete retards.

      Sorry not sorry. That post about the woman that euthanized herself is the real deal.

      This is a very serious condition and should not be downplayed like it is.
       
      • Like Like x 3
      • Agree Agree x 1
    26. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      • Informative Informative x 3
    27. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Hey some cancer cases also spontaneously resolve.
       
      • Like Like x 1
    28. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Maybe they actually are demented psychopaths that get off on people suffering?

      That's the explanation I'm going with until I see evidence to the contrary.
       
      • Agree Agree x 1
    29. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Excellent @TuxedoCat!! I hope more people take time to watch that clip. That is the information that an organization should expound on when given the opportunity like the ATA was given!! No..- most cases do not find that it fades away or is simply bothersome.

      Thank you for posting that.
       
      • Agree Agree x 1
    30. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Greg Sacramento I love your posts and information and we have the same cause in our minds. To help those who cannot afford simple tests. Patient care advocacy. I don't know if that would work now. I tried years ago and egotism took over when it became popular.
       
      • Agree Agree x 1

Share This Page

Loading...