Let's Increase Tinnitus Research Funding in the US — Our Input for NIDCD's Strategic Plan

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Mar 7, 2020.

    1. Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base

      nidcd-tinnitus.png

      After the flurry of activity recently around political lobbying in the UK for more tinnitus research funding during Tinnitus Week, we now have an opportunity to put tinnitus on the political agenda in the US as well.

      The National Institute on Deafness and Other Communication Disorders (NIDCD) is the institute, within the US National Institute of Health, that is mandated to conduct and support biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.

      NIDCD has recently undergone a change in leadership and are interested in hearing from you about your concerns with tinnitus. They are collecting information to develop a new strategic plan which will be implemented in 2022. The new strategic plan will influence the level of funding they will request through NIH and ultimately from Congress and the President, for tinnitus research.

      The NIDCD is holding an open comment period that still runs until 31 March.

      The questions are:
      1. What are the most significant scientific discoveries in hearing and balance, taste and smell, and voice, speech, and language that have occurred in the past five years?
      2. What are the unmet needs in current research and training that may impact hearing and balance, taste and smell, and voice, speech, and language?
      3. Describe the opportunities in hearing and balance, taste and smell, and voice, speech, and language that may be realized in the next five years.
      4. What are the greatest challenges or barriers to progress in hearing and balance, taste and smell, and voice, speech, and language?
      5. What is the greatest public health need of individuals with disorders of hearing and balance, taste and smell, and voice, speech, and language that may be helped with additional research?

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      In order to help you create your response to NIDCD’s questions, we are providing you with the template answers below. These are merely suggestions to help you on your way; feel free to cut, paste, and edit as you see fit!

      The working group responsible for putting together this well-researched information consists of: @TuxedoCat, @mrbrightside614, @lcj, @HootOwl, @OnceUponaTime and @Watasha. A big thank you to all of them for spending many hours on this!

      We strongly urge all of you to respond individually. Numerous individual responses to NIDCD will be an effective way of letting them know that tinnitus is an important condition that needs more research funding for effective treatments and cures.

      It would be great if you could also mention that you're a member of Tinnitus Talk. This will help portray us as a strong and knowledgeable community of tinnitus sufferers who work together to affect change.

      The form where you submit the answers is located here.

      Please take advantage of this unique opportunity to affect real change!

      question-1.png

      What are the most significant scientific discoveries in hearing and balance, taste and smell, and voice, speech, and language that have occurred in the past five years? (Please provide references to scientific journal articles, if applicable.)


      answer-1.png

      When answering this question, please begin by stating that you are a member of the online support forum Tinnitus Talk and then very briefly tell your story (ex. How long you’ve had tinnitus, its cause, if you know, and its impact on you and your life.)

      Your response to NIDCD may be made anonymously. When you submit the webform you can opt out of including your name and email address.

      Here are some facts that you might consider incorporating into your response to Question 1:
      • The prevalence of tinnitus is staggering. It affects 15% or over 50 million Americans.
      • Active and Veteran military personnel, senior citizens, musicians and music lovers, motor sport and hunting enthusiasts and people who work in loud work environments are most at risk for developing tinnitus.
      • Those of us with tinnitus view it as occurring on a spectrum of severity. Some may be less severely affected and not bothered, but as severity increases tinnitus can become extremely bothersome and intrusive. It may even reach a debilitating point, particularly when tinnitus occurs in combination with hyperacusis (sound intolerance or pain).
      • Tinnitus has social impacts and adversely affects Quality of Life. Painful hyperacusis adds to the burden of tinnitus.
      • Depression and anxiety often accompany tinnitus and suicidal thoughts are significantly more common among people with tinnitus than among the general population (Szibor et al., Tinnitus and suicide: An unresolved relation. Audiol Res. 2019 May 6; 9(1): 222).
      • In 2012, the Veterans Association reportedly spent $1.2 billion on tinnitus related compensation and this was expected to exceed $3 billion by 2017 (American Tinnitus Association, Treating and Curing Tinnitus is Part of Our National Commitment to Veterans. May 22, 2014).
      • Although advances have been made, there have been no scientific discoveries or breakthroughs that have led to an effective treatment or cure for tinnitus.
      • There are numerous theories, but the overall pathophysiology of tinnitus, including the mechanisms that trigger and cause it to become chronic, are unexplained and unknown.
      • In the absence of medical treatments, management strategies including sound therapy, TRT, CBT aim to reduce tinnitus distress and are not expected to affect the loudness or other characteristics of the tinnitus precept.
      • Hearing aids aim to address hearing loss, the most common health condition associated with tinnitus.
      • Neuromodulation (bi-modal stimulation) is an emerging field of research for the treatment of tinnitus. In the US, Dr. Susan Shore has been researching this approach for two decades. Preliminary results from animal testing and human clinical testing among a limited sample, have yielded encouraging results. Phase 2 testing is expected to complete in the summer of 2020. (Marks, K.L., Martel, D.T., Wu, C., Basura, G.J., Roberts, L.E., Schvartz-Leyzac, K.C., Shore, S.E. (2018). Auditory-somatosensory bimodal stimulation desynchronizes brain circuitry to reduce tinnitus in guinea pigs and humans. Science Translational Medicine, 10(422). Retrieved from https://stm.sciencemag.org/content/10/422/eaal3175)
      • Regenerative medicine as applied to hearing restoration has been advancing at a steady pace. To the extent that hearing loss causes tinnitus, it is hoped that this technology will quiet tinnitus.
        • FX-322 (Frequency Therapeutics) for the treatment of sensorineural hearing loss has been granted fast track status by the US FDA. Frequency Therapeutics has also added a tinnitus arm to their Phase 2 study with results expected in late Q3 2020.
        • Hough Ear Institute recently licensed it’s free radical scavenger NHPN-1010 to Oblato, Inc. Oblato will finance the drug through Phase 2.
        • OTO-413 (Otonomy, Inc) and PIPE-505 (Pipeline Therapeutics) are drugs intended for the treatment of cochlear synaptopathy. Both are in Phase 1/2 clinical trials with results expected in late 2020.
      • A drug to treat tinnitus. Professor Thanos Tzounopoulos, at the University of Pittsburg, has a redesigned molecule, RL-81, which based on the epilepsy drug, Retigabine. If successful this drug will be indicated for tinnitus and it is currently progressing through a pre-clinical and clinical development at the University of Pittsburg.

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      What are the unmet needs in current research and training that may impact hearing and balance, taste and smell, and voice, speech and language?

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      • Hearing regeneration is an area of active research that is progressing at a steady pace. Given the association between hearing loss and tinnitus the question of whether or not hearing regeneration will silence tinnitus requires further exploration.
      • Both the etiology and individual manifestations of tinnitus are heterogeneous. There is a need to subtype tinnitus patients. Experts agree that more than one effective treatment and multiple cures will be needed.
      • The pathophysiology of tinnitus is extremely complex and we have very few scholarly studies, imaging studies, and biomarkers by which we can appropriately capture an objective picture of tinnitus.

      These are examples of why an effective treatment or cures for the tinnitus precept would greatly improve the quality of life of everyone with tinnitus and be of great benefit to society:
      • As patients we have a very strong desire for a cure. Current therapies fall into the category of management strategies that assist with coping and habituation. Severely affected individuals may not respond to such strategies because their tinnitus is too loud, too intense or too intrusive for the brain to effectively reframe it as ‘the new normal’.
      • The proliferation of scams and products based in pseudoscience and quackery provides evidence of the desperation people with tinnitus can have for relief.
      • There are reports that tinnitus worsens as time passes from members of Tinnitus Talk (Dave's Tinnitus Story found at youtube.com/watch?v=skn3Cqn3k3g) and published stories of the personal lives of sufferers (Anthony Mennella, Tinnitus Today 44(3):26 Winter 2009).
      • Due to a lack of evidence, clinical practice guidelines offer little meaningful treatment beyond CBT, sound therapy and a hearing assessment.
      • Tinnitus is not a psychological condition, yet psychological therapies are the ones most offered to patients.
      • Not all physicians follow the AAO Clinical Practice Guidelines -Tinnitus leaving some patients underserved and without the most basic of tinnitus therapy (Bhatt JM, Lin HW, Bhattacharyya N,JAMA Otolaryngol Head Neck Surg 2016:142(10):959-965).
      • Even those who deem themselves successfully habituated still contend that they would sacrifice much for significant diminishing or complete eradication of their condition.

      Evidence for the Need for Research, Funding, Coordination and Oversight
      • The first recorded reports of tinnitus date back to the time of the Egyptians, yet there have been no real breakthroughs or discoveries in tinnitus research. Why? As tinnitus patients we feel frustration and impatience; why isn’t there a cure, why don’t we understand more, why are we not hearing of breakthroughs and feeling hope, where is the funding?
      • There is a need for a clear research agenda that leads to a cure for tinnitus along with coordination and oversight of research. We are aware of reports from researchers and research coordinators that the tinnitus field has been viewed as chaotic and inconsistent.
      • Collaboration among researchers must be emphasized. Some describe the quest for tinnitus treatments as ‘a fishing expedition’ because research is not grounded in basic science. (Dr. Susan Shore, vimeo.com/365066239).
      • Collaboration between researchers and tinnitus patients must also be emphasized, in order to ensure that research explicitly addresses patients’ needs.
      • NIDCD and NIH need to give tinnitus research high priority and much more than past funding so that a stop is put to the perception that tinnitus is not important. This leads to investigators’ lack of interest and resulting neglect. A PubMed search on the term depression returned a listing of 432,104 in the database, while a search on tinnitus returned only 13,131.
      • The Department of Defense also underfunds tinnitus research given the number of active and veteran military personnel with tinnitus and those receiving tinnitus related compensation. Compared to overall defense spending in the neighborhood of $700 billion in 2018, the amount spent on hearing loss and tinnitus research estimated at $4 million in 2017 is not even a drop in the bucket.
      • We cannot expect tinnitus associations to fund all levels of research. The American Tinnitus Association has a very small research budget of about $150,000 per year. This is enough to fund seed grants and student research but nothing more.

      question-3.png

      Describe the opportunities in hearing and balance, taste and smell, and voice, speech, and language that may be realized in the next five years

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      • Tinnitus is heterogeneous in its etiology and it is widely held that subtyping exists. There is opportunity for research in this area.
      • There is a huge opportunity to change the way tinnitus research is structured. Tinnitus is a complex neurological condition that requires interdisciplinary research for a cure. Although research organizations exist, we know of no organizational structure with steering committees and subcommittees for creating a research agenda and driving it forward. Researchers must be compelled to agree to a timeframe.
      • There is an opportunity, with adequate funding, to focus attention on achieving a basic understanding of the pathophysiology of tinnitus. If this were known, therapeutic targets could be identified.
      • Tinnitus and suffering occur worldwide. For the sake of efficiencies, tinnitus researchers need to unite globally around a common plan.
      • There are many research opportunities in the tinnitus field. Many of them now exist as impediments to forward progress and are described more in the answer to question 4. Briefly, they include
        • Updating information on tinnitus prevalence and impact in the United States
        • Subtyping tinnitus
        • Identify an objective measure of tinnitus
        • Identify biomarkers of tinnitus
        • Identify and gain consensus on appropriate animal models for preclinical study
        • Importantly, studies of the neural pathophysiology of tinnitus are needed to identify therapeutic targets to inform the molecular design of a targeted treatment
      • Regenerative medicine is advancing and it seems possible that sometime within the next 5 years it will be known if restoring hearing loss quiets tinnitus and for whom.

      question-4.png

      What are the greatest challenges or barriers to progress in hearing and balance, taste and smell, or voice, speech, and language?

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      • The recent scientific publication entitled “Why Is There No Cure For Tinnitus?” addresses this question in detail. The article is available open access at frontiersin.org/articles/10.3389/fnms.2019.00802/full. Highpoints of the article include:
        • The authors establish that there are patient and economic pressures to find a cure for tinnitus. However, interest in tinnitus and the output of tinnitus research pales in comparison to other conditions like such as chronic pain, depression, anxiety and hearing loss.
        • The authors discuss the following series of obstacles and impediments to finding a cure for tinnitus:
          • NIH funding allocated to tinnitus and hearing loss is nearly nonexistent compared to funding for research into other conditions with similar socio-economic burden such as diabetes.
          • Tinnitus research is by nature multidisciplinary, yet there are few centers where cross-specialty expertise is available.
          • Unclear tinnitus prevalence which makes it difficult for large pharmaceutical companies to estimate need.
          • Ambiguous tinnitus definitions and subtyping.
          • Homogeneous versus heterogeneous clinical trial populations and trial design.
          • Lack of objective tinnitus measures and biomarkers.
          • Multiple proposed theories of tinnitus pathophysiology.
          • Animal models in tinnitus research. Treatments that have been successfully tested in animals fail in humans.
          • Timing. There may be a difference in therapeutic targets depending on whether tinnitus is in an acute or chronic phase.
          • Lack of agreement on outcome measures of success for new treatments, for example reduction in distress versus reduction of tinnitus volume.
          • Regulatory pathways and hurdles are not established
      • To some, this list indicates that researchers have not been researching for a cure but researching for the sake of doing interesting research. For example, the need for and advantages of objective measures has long been known in any field of research, so why is it this need was not addressed by tinnitus researchers long ago?
      • The paper goes onto mention the need for step change to deliver progress toward truly effective treatments. Step change is not easy and it’s not clear from the paper how it will come to pass, only that it is clearly needed.
      • The Tinnitus Talk patient community agrees with the need for step change and ask NIDCD and NIH to not only become large funders of tinnitus research but to also be patient advocates by insuring that the goal of tinnitus research is a cure, that a plan is in place for achieving this, that the right talent is in place, researchers are aligned with the plan and will be held accountable to the plan and its deliverables.
      • There is an immediate need for curative research and for FDA to expedite approval/release timelines to make drugs and devices available to the tinnitus community.

      question-5.png

      What is the greatest public health need of individuals with disorders of hearing and balance, taste and smell, or voice, speech, and language that may be helped with additional research?

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      • Apart from a need for a cure, as discussed in previous answers, there is an urgent need to raise awareness to the tinnitus condition. Many members of Tinnitus Talk say they were never told anything about tinnitus and really only learned about it when they developed it.
      • Raising the public’s awareness to tinnitus is important. It is an invisible condition which makes its potential severity difficult to understand. People with tinnitus have long held the belief that someone without tinnitus can never really understand what it’s like to have the condition.
      • Members of the tinnitus community consider tinnitus severity to occur on a spectrum. Some are not severely affected, habituate and get on with their lives. These are often the tinnitus patients we see portrayed in awareness videos. The devastation which can be tinnitus is never spoken of, which gives the false impression that everyone with tinnitus can live happily ever after.
      • It is not a forgone conclusion that everyone with tinnitus lives happily ever after. Such a false impression could cause disregard of warning messages intended to educate on the prevention of tinnitus.
      • Although cause and effect has never been proven, hearing loss is often associated with tinnitus. It would seem that messaging about the prevention of hearing loss would be the best approach to preventing tinnitus.
      • From a public health perspective, hearing loss gets very little attention, and tinnitus gets almost none. The message should not be about the steps needed to just prevent hearing loss, but rather steps needed to prevent hearing loss and tinnitus.
      • The other public health issue frequently discussed by people with tinnitus is safe noise levels for people with tinnitus. It is widely recognized that there is a strong correlation between noise exposure and the onset or worsening of tinnitus yet there is no clear consensus as to what is a safe level of noise exposure and for what duration for a person with tinnitus.
      • The perception among many members of the tinnitus community is that there should be lower noise safety levels recommended to the tinnitus population and in the absence of clear guidance on the matter, many tend to avoid noisy situations which can result in withdrawal from social situations and isolation, difficulty in implementing CBT and audiological counselling techniques aimed to restore normal day to day living and the possible development of sound intolerance known as hyperacusis.
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    2. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Please find attached also a document containing Tinnitus Hub's formal reponse to the NIDCD. It contains much of the same information as above, but written out a bit more elaborately.
       

      Attached Files:

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    3. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Everyone,

      Tinnitus needs more research. When it comes to research some of us may have our favorite approaches to causes of tinnitus and where an effective treatment may be targeted - some are more "ear" people and others may be more "brain' people. But the bottom line is the same, tinnitus research has been underfunded and neglected. We need to be sure that the right people understand our position on this and continue to work through the system to affect change.

      British, consider writing your MP, @Ed209 stands ready to help and there is information on BTA's website which you can make use of.

      Americans, sending letters to Congressmen and other government officials, FDA for example, may be our next step. And, we are still working towards approaching the Veterans Associations and possibly AARP in the US.

      As far as Tinnitus Hub's response to NIDCD goes, I think it is important that it represents all of us. That's what we tried to do, to represent the fact that more research is needed and in a balanced narrative.

      There are people on Tinnitus Talk with backgrounds and skills that they have freely shared and are true team players. Because of them Tinnitus Hub has been able to respond to the call for comments on NICE Guidelines, attended and contributed to a roundtable discussion on tinnitus at the UK House of Commons and now will enable us to give comments to the NIDCD. Thank you.

      At this point I would also like to thank all of you, in advance, for taking the time to respond to NIDCD's questions. Tinnitus Hub will submit a response as well, but it's been suggested by a team member, with experience with this type of lobbying, that a considerable volume of responses to NIDCD will be noticed. If there is anything, anything we can do to help you accomplish this, please do not hesitate to ask anyone of the team members listed in the first post of the thread.

      Many thanks,
      TC
       
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    4. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Here's a more dense breakdown of the curative science referenced in question number one.

      Bi-modal Stimulation

      1) Dr. Susan Shore
      of the University of Michigan has been working on a bi-modal stimulation device for the specific treatment of tinnitus for the better part of two decades. Results from her phase one trial revealed “tinnitus reduction reached an average of 12.2 dB in the fourth week of active treatment...[and] of the 20 participants tested, 2 reported complete elimination of their tinnitus toward the end of the active treatment period”. Additionally, Shore’s bi-modal stimulation was compared to a placebo treatment of which no participants experienced such decrements in tinnitus volume. Shore’s device is on pace to finish its final phase of testing (phase 2) in the summer of 2020.

      References:
      • Marks, K.L., Martel, D.T., Wu, C., Basura, G.J., Roberts, L.E., Schvartz-Leyzac, K.C., Shore, S.E. (2018). Auditory-somatosensory bimodal stimulation desynchronizes brain circuitry to reduce tinnitus in guinea pigs and humans. Science Translational Medicine, 10(422). Retrieved from https://stm.sciencemag.org/content/10/422/eaal3175
      2) “Lenire” is a treatment that is currently available in Ireland. While Shore’s device targets the neck or jaw, Lenire targets the tongue. It should be noted that the waiting list for patient approval is 2-4 months long, while the reception of the device can take another 2-4 months after confirming participation in the study. Results from clinical trials have been encouraging, but data have now been locked until August 2020; conversely, user reports on Tinnitus Talk have yielded equivocal results.


      Inner Ear Hair Cell & Cochlear Regeneration Therapies

      1) Frequency Therapeutics
      entered the hearing regeneration space with the formulation of an intratympanic drug, “FX-322.” A first-in-class drug, FX-322 is “designed to treat the underlying cause of sensorineural hearing loss (SNHL) by regenerating hair cells through activation of progenitor cells already present in the cochlea.” Since tinnitus is thought to be a consequence of hearing loss, logic follows that treating hearing loss will improve or remove tinnitus symptoms. Frequency Therapeutics’ phase 1/2 results determined that four of fifteen participants who had been administered a single dose of FX-322 experienced 10dB improvements in thresholds at 8kHz. Further, those same four participants had clinically significant improvements in clarity of sound, doubling their word scores in a quiet background and experiencing a 20% improvement in word scores in a noisy background at 90-days post-administration. What’s even more exciting is that not only has the FDA has granted FX-322 fast-track status for the treatment of sensorineural hearing loss (SNHL)(15), but that Frequency Therapeutics has added a tinnitus experimental arm to their phase 2 experiment(16), which is set to be complete by late 3Q 2020.

      References:
      2) Of the 73 Hearing Research Program applicants vying for a Congressionally Directed Medical Research Programs (CDMRP) grant—only one company, Hough Ear Institute, was awarded the $1.9 million grant. Their drug—a free radical scavenger pill ”HPN-07" passed phase 1 for safety in 2015 and a paper published in 2018 reported some remarkable findings. In a study wherein Sprague Dawley rats were induced to have permanently shifted their auditory thresholds via an open field acoustic blast insult, rats that were treated with HPN-07 plus N-acetylcysteine four weeks after the initial trauma exhibited restoration of inner hair cell (IHC) ribbon synapses. Hough Ear Institute has recently licensed exclusive rights of their hearing regeneration drug—now termed “NHPN-1010”, a combination of HPN-07 and N-acetylcysteine—to Oblato Inc. who will be financing the drug through phase 2 clinical trials.

      References:
      3) Two drugs are being formulated for the treatment of cochlear synaptopathy—a condition that concerns the degradation of auditory nerve fibers termed “hidden hearing loss,” which chiefly manifests itself as a lack of clarity upon hearing speech-in-noise.

      3.1) Otonomy, Inc. are currently phase 1/2 trials with their sustained-release BDNF (brain-derived neurotrophic factor) drug, “OTO-413” with results expected in the second half of 2020. Non-clinical studies by Otonomy “have demonstrated that local administration of BDNF repairs ribbon synapses damaged due to noise trauma or exposure to ototoxic chemicals and restores hearing function.”

      References:

      3.2) Pipeline Therapeutics has developed “PIPE-505”—a gamma secretase inhibitor that aims to regenerate “the cochlear synapse, [which] should augment signal-to-noise processing and manifest as improved speech-in-noise comprehension.” Their phase 1b/2a study is due to commence in the near future.

      References:

      KV7 Potassium Channel Modulators

      1) Professor Thanos Tzounopoulos
      received a $2 million grant in 2018 to finance research on “RL-81”—a reformulation of an epilepsy drug, “retigabine/ezogabine” which had been anecdotally reported to have diminished tinnitus symptoms. While the drug was discontinued in 2017 after the emergence of a host of problematic side-effects, many users on the Tinnitus Talk forums experienced a dose-response effect regarding relief of their symptoms.

      References:
      2) Knopp Biosciences is developing a drug for epilepsy, “KB-3061” that is aimed to modulate the same channels as RL-81. While epilepsy is the company’s primary target, they’ve list tinnitus as a potentially applicable condition.

      References:

      I’d really like curative research to be highlighted in terms of its immediacy of need in hopes to expedite FDA approval/release timelines
      .
       
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    5. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I've filled out the form. Thanks for providing the guidance.
       
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    6. Bobbette

      Bobbette Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      Fucking impressive work❗️ The ATA should take a cue or two from you.

      I sent in my comments to NIDCD, the templates were very helpful.
       
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    7. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @GregCA, @Bobbette,

      Thank you both for your submissions.

      If you have any family and friends that might communicate their view on tinnitus research to NIDCD, please invite them to take part by submitting a response.

      It would be very helpful if they mention they were made aware of the opportunity to respond from a member of Tinnitus Talk.

      Good luck!
       
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    8. Selah1281

      Selah1281 Member Benefactor

      Location:
      Bustown, OH10
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      I sent @Markku a PM previously asking about this. I am not a veteran. However, my mother works for the VA and a doctor I am seeing at Ohio State University told me she has a connection at the VA.

      No guarantees, but I could reach out to them for assistance if you think it would help.
       
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    9. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Hi all,

      This is for US people, right?

      I will do the MP letter soon.

      Amazing work and templates are the way forward.

      Thank you.
       
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    10. Aussie Lea
      Dramaqueen

      Aussie Lea Member

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      01/09/2013
      The form only asked for Name and Email and both were optional fields so anyone can fill and send it. I just did! I'm from Australia.
       
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    11. Selah1281

      Selah1281 Member Benefactor

      Location:
      Bustown, OH10
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      I reached out to Dr. Gayle Whitelaw at OSU. She mentioned the direct connection in the VA to someone who specializes in tinnitus and maybe hyperacusis there. So hopefully she responds with a point of contact.

      If not, I will then reach out to my mother. She works in middle management at the Beckley, WV VA in the mental health clinic so she doesn’t have any immediate connections to people focused on tinnitus etc.
       
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    12. lcj

      lcj Member Podcast Patron Benefactor Advocate

      Tinnitus Since:
      2001
      Cause of Tinnitus:
      medication
      Submitted! Chris and I are also going to post the link to the tinnitus Facebook groups.
       
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    13. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Everybody needs to make sure that we get behind this effort! Think of it this way, instead of making a few more posts on this forum, do this instead.

      Meaningful actions that are scaleable make such a difference. Exceptional work everyone.
       
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    14. all to gain
      No Mood

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      never trust a doctor
      Do you think it matters that everyone who fills it in is going to have pretty much identical answers?

      I'll do it next week.
       
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    15. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      According to @lcj's husband, who has political lobbying experience and advised us on this project, that's actually a good thing, because the multitude of similar responses puts more weight behind our message. That said, of course feel free to adapt the template in any way :)
       
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    16. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      Is it acceptable to type out our intro/story then just copy and paste the point form for the remaining questions? I want to put in all the info I can but I don’t want to have to rewrite a bunch of points, especially those I’m not deeply familiar with.
       
      • Like Like x 3
    17. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Yes, that's fine, you can quote verbatim if you want!
       
      • Like Like x 1
      • Agree Agree x 1
      • Useful Useful x 1
    18. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Ed, its been on my mind to ask you if there is any way members of Tinnitus Talk, irrespective of nationality, could do something similar for you guys in the UK. Is there a certain MP to whom we could send emails? As Hazel explained, Chris is involved with this type of lobbying here in the US and his advice to the team was that even international responses put weight behind the message. And if individuals identify themselves as belonging to Tinnitus Talk, it will validate the group as being cohesive, knowledgeable and active.

      TC
       
      • Like Like x 3
    19. all to gain
      No Mood

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      never trust a doctor
      Done it!

      I changed it up quite a bit but used lots of information provided above. Put a mention of Tinnitus Talk in there, too.

      True team player @Hazel, @Markku, @erik.
       
      • Winner Winner x 9
    20. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      I've just submitted my answers now.

      Thank you all who have worked so diligently and selflessly towards this.

      I pray for a good outcome.
       
      • Winner Winner x 7
      • Like Like x 2
    21. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Done!
      I urge you all to please take a moment to submit your answers to the NIDCD.
      It is easy. Just copy and paste the template answers!!!
      The more people sending the same message the better chances we have for them noticing our need for a cure.

      We need to come together just like we did for the Stat Madness competition, winning it for the University of Michigan and Susan Shore. How sweet that was and how good we all felt!!

      Also, please share the link on social media.
      Let's do this again!

      40b614606c955a16220a180057f56579.jpg
       
      • Winner Winner x 12
    22. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      And please, when you submit your answers to NIDCD, make sure to let us know here.


      done.png done3.png images.png


      untitled.png done4.png
      donee.png
       
      • Like Like x 4
      • Agree Agree x 4
      • Funny Funny x 1
    23. thinlay
      Chicken

      thinlay Member

      Location:
      PARIS
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      syndrome of costen ? not sure
      Done.
       
      • Winner Winner x 9
      • Like Like x 1
    24. BBakkers
      Wishful

      BBakkers Member Podcast Patron Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      2011, Spike 2019
      Cause of Tinnitus:
      1e Loud Music, 2e Combi of music/earwax/stress
      Did it as well. Thanks for the hard work!
       
      • Winner Winner x 8
      • Like Like x 1
    25. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I did this and I also added a small intro about Tinnitus Talk and the effect that tinnitus has had on my life by forcing me to quit being a working musician, etc.

      I’m aware I’m not American, but I thought what the hell, and did it anyway :)

      What is there to lose.

      Every person that reads this thread should take action and do it because it’s no more difficult than making a thoughtful post on this forum.
       
      • Winner Winner x 8
      • Like Like x 1
    26. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss

      Hi Ed,

      Thanks for taking the time to put your response together and sending it in.

      Tinnitus and suffering occur all over the world. Plus it will help Tinnitus Talk be recognized by NDICD.

      Please let me know if myself or others can write to one of your MPs or some other tinnitus champion in the UK government! Serious tinnitus research for a cure helps the entire global community and we should support it no matter where we live.

      Thanks again, TC
       
      • Like Like x 1
      • Winner Winner x 1
    27. aot
      Artistic

      aot Member

      Location:
      USA
      Tinnitus Since:
      2016. Worsened 11/2019
      Cause of Tinnitus:
      Probably sound induced.
      Done. :rockingbanana:
       
      • Winner Winner x 7
      • Like Like x 1
    28. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      I believe anyone can submit their answers as they are not asking for name or any private information.

      Let's not forget that we have a deadline, March 31, 2020!!!
      We need you all to submit your answers, ASAP!

      letsdothis.gif
       
      • Agree Agree x 5
      • Like Like x 2
      • Winner Winner x 1
    29. Jaysterk
      Blah

      Jaysterk Member

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Neomycin
      Would it be ok to copy and paste the above provided bullet points?
       
      • Good Question Good Question x 1
    30. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      Yes! Just briefly add your story and mention you are from Tinnitus Talk at the start of question 1 and you’re all set!
       
      • Like Like x 1
      • Agree Agree x 1
      • Winner Winner x 1

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