Advocacy Campaign for Research on Trobalt and Tinnitus

[attheedgeofscience]

Dear worldwide tinnitus community,

In the past few days, and after the failure of the QUIET-1 study, there has been an attempt to increase awareness of the work of the scientists behind the following paper on four different potassium channel openers - one of which is Trobalt/Retigabine:

www.researchgate.net/publication/261220232_Pharmacodynamics_of_potassium_channel_openers_in_cultured_neuronal_networks

The paper, above, presents theoretical (in vitro) evidence of Trobalt being a potent drug to eliminate symptoms of tinnitus and coupled with the informal evidence from some members of this board who have tried the medication, there seems to be sufficient indications that Trobalt should be investigated further in relation to the treatment of tinnitus. The best way to create attention is to do just that: create attention - or awareness. In addition, a more formal study should be undertaken in order to better understand (from a human perspective):

• Treatment protocol and duration
• Efficacy in relation to etiologies
• Efficacy in relation to chronicity of tinnitus
• Maintenance of efficacy (after tapering down)
• Other topics of concern/interest (for instance, side effects)

As a former member of [USERGROUP=11]@Team Trobalt[/USERGROUP], it has been a while since I have corresponded with the authors of the paper, but in the interest of sharing information with the public, I will present the following pieces of information obtained via the lead researcher on tinnitus, Prof. Ernest Moore (from e-mails):

...A snapshot of the findings is that we can treat tinnitus, with pre- and post-treatment results that are significant. While this is a case study, perhaps a clinical trial of this nature could be done using Trobalt and, of course, including more patients.

Thank you for your most recent email, as well as your earlier correspondence of last week. We continue to be interested in the efforts you are making towards tinnitus treatment - congratulations on your most recent progress to engage others interested in tinnitus. We would reiterate that our contributions lie within three spheres of research activity: (1) Our basic science research consisting of in vitro recordings of tinnitus-like activity, and the re-purposing of drugs to minimize increased neuronal activity and bursting phenomenon, (2) Our basic science in vivo experimentation using the zebrafish as an experimental model for tinnitus-like activity, and (3) The use of fMRI imaging protocols with humans suffering from tinnitus by employing re-purposed or over-the-counter supplements in an attempt to alleviate tinnitus. Thus, as regards the latter, we have already in place the basic milieu to continue to test the efficacy of Trobalt (Retigabine). Fundamental to our basic and translational research activities is a comprehensive Tinnitus Clinic as part of our UNT Speech and Hearing Center that evaluates patients suffering from tinnitus, and make recommendation for treatment.

There is therefore good reason to support awareness of the work of the researchers: they are aware that there people who have seen benefits from trying it. But funding for research has been cut. As evidence of this, I will release additional information from two of the five co-authors of the paper (but I will not name them):

Thank you for your recent e-mail. Although the in vitro research was done in my lab, Dr. Moore is the expert on tinnitus. I have already suggested that we should quantify the neurotoxicity of this compound before we address specific mechanisms. However, we do not have the resources to start new projects. Support for research has been cut substantially.

Thank you for your interest in the work. We do not know the mechanism of how retigabine (Trobalt) decreases induced firing of neurons, or whether this activity could suppress symptoms of tinnitus. In light of the known side effects of the drug (blue eyes, skin, tremor, etc) it is not likely to be useful for treating tinnitus, especially long term. Dr. Moore's lab is currently working on potentially more effective alternatives with fewer or no side effects. However, securing funding for this research remains an uphill battle.

So supporting their work and raising awareness is important indeed.

Regarding advocacy, during the last 3-4 days, I have monitored the "read"-activity related to their publication:

As can be seen, there has been a steep climb in activity. So spreading the message does work.

If there are members of the forum who wish to contribute to advocacy, feel free to write concrete steps for doing so or ask to join Team Awareness. Raising awareness and advocacy is relatively easy, but requires persistence to get results. Examples include:

• Contacting journalists
• Contacting health authorities
• Contacting interest groups that may have a direct or indirect interest in tinnitus (ATA, BTA)
• Donating money for e.g. sponsored ads on Facebook

As an example of advocacy, I have in the past couple of days contacted the CEO of the Wounded Warrior Project which has three million fans on Facebook and asking if they would be willing to share an update of the research being undertaken on Kv-channels. Just a single update by them would send the ratings through the roof... Another step, I have taken is to contact the journalist Ms. Anna Hodgekiss who wrote the following article a while back...

http://www.dailymail.co.uk/health/a...TINNITUS-reduces-hyperactivity-cells-ear.html

...to let her know about the results obtained here on the forum, and, ask her if she would be willing to do another article. These are the kind of relatively simple steps that can be taken.

Lastly, please be kind to keep this thread on topic. Only relevant input please. Don't let it drift off-course. Thanks.

attheedgeofscience
16/OCT/2015.

 

[jeffie7]

Just liked the T-Hub on facebook. If you ever do any ads, or videos, let me know I'd be more than happy to provide the music for it.

 

[Thorbamse]

Fantastic post, ATEOS, you're really doing something it's really greatly appreciated. Where is it possible to donate for sponsored facebook ads, whom am I supposed to contact?

 

[Eltel]

Shared

 

[Pumpkin]

Do we know if anyone on tinnitus talk has made any sort of short film/documentary? This may be something I can help with if its not already in progress.

 

[Onnie]

I have a network of designers, animators and people in advertisement and I have been thinking about getting a group of people toghether to make a short animation on the subject of tinnitus. But it might as well be a short advertisement to raise awareness on the need for more research on trobalt. Or maybe even a tool to help raise money (for sponsored advertisments on fb for example)

The problem is my lack of scientific knowledge on the subject. I sort of get how it all works but it's no where close enough to translate this to a content of a product explaining all this.

Now i think there must be more creatives on tt and maybe if more people, like @jeffie7, chip in we might be able to make something that could make a difference?

@Pumpkin sorry i did not see your post untill just now.

I know there are some small projects on the matter but i think we need something BIG here. And with big i mean something that is nice enough to watch so people are willing to share .

 

[Pumpkin]

@Onnie WOW!! An animation would be amazing!! Something that could be shared easily by maximum number of people!! Yes thinking big sounds good!! If there's anything I can lend a hand to please let me know!

 

[OnceUponaTime]

I have a network of designers, animators and people in advertisement

This is BIG! Somebody better notice this and contact you! I worked in advertising for many years and it works! Are they willing to work pro-bono or volunteer their services?? That would be a great plus! Just saying..

 

[Mic]

Ok... a little advice from my side to raise more awareness on this matter @attheedgeofscience @Markku.

In my daily life I am a policy maker in a political organisation. In coherence with the political agenda we formulate policy solutions for all kinds of problems in society that need a solution. The problem with policy making is that the chance of approval and success (getting the necessary funding and getting things in motion) is very low. This is because the field of problems is bigger than the capacity and resources to solve these problems. The solutions that get the chance to be set in motion are determined by political will, public opinion, urgency perception etc. That is exactly the reason why a good policy maker always stimulates and waits for the alignment of enabling factors to set things in motion. This we call a: Window of opportunity.

In case of more awareness for research on Tinnitus (and to make a long story short) you need to determine your enabling factors to create a 'window of opportunity'. In this the first step is to determine what your target audience should be to set things in motion. The message that is spread above tends to be targeted to a scientific group ( average Joe and Jane would scratch their heads when reading about potassium channels). The question is: Could scientist initiate a big research project on the effects of Trobalt on Tinnitus? In my opinion the answer to this question is almost certainly a no!

If you want to set things in motion you need to find a target audience with power and money. Tinnitus is big business for a pharmaceutical company that can invent a solid solution (1 to 10 % of 7 billion people is a potential customer base of 70 to 700 million people, do you hear the sound of a cash register next to the sound of your T . My humble advice with respect to creating awareness is not spreading scientific prove or collecting likes on FB, but approaching the right person in the right organisations with the necessary power to get things done (suggestion: CEO's of Valeant and GSK??). If public awareness is still necessary in your opinion (next to corporate awareness) you could try to persuade Will.I.Am or Chris Martin from Coldplay (both known to have T) to share on FB or retweet on Twitter our message to millions of people with one simple click...

 

[Thorbamse]

I agree with this statement:

Tinnitus is big business for a pharmaceutical company that can invent a solid solution (1 to 10 % of 7 billion people is a potential customer base of 70 to 700 million people, do you hear the sound of a cash register next to the sound of your T

I am aware that T is a very complex thing indeed and it will probably be a killer finding effective medication for chronic T, but If the pharmaceutical industry realize how enormous a profit there is to be made from a effective treatment, that maybe is not even a 100% cure, but potentially could lower volume maybe 30-50%, I think they would throw some more dollars into research. How much would you pay to get rid of or lower your T? I know I would probably sell everything I own to have that opportunity..

With a potential customer base tallying millions upon millions that would be willing to spend a lot of cash on treatment, the profits could be mind blowing. I hope someone with power, influence and scientific knowledge of berserker-neurons come to that conclusion soon and gives finding a cure another shot.

 

[Lloyd Carter]

I am aware that T is a very complex thing indeed and it will probably be a killer finding effective medication for chronic T, but If the pharmaceutical industry realize how enormous a profit there is to be made from a effective treatment, that maybe is not even a 100% cure, but potentially could lower volume maybe 30-50%, I think they would throw some more dollars into research. How much would you pay to get rid of or lower your T? I know I would probably sell everything I own to have that opportunity..

With a potential customer base tallying millions upon millions that would be willing to spend a lot of cash on treatment, the profits could be mind blowing. I hope someone with power, influence and scientific knowledge of berserker-neurons come to that conclusion soon and gives finding a cure another shot.

But the chances of finding significant relief or a cure are so drastically low that the risk involved in going through a decade of trials (which in addition to time, costs lots of money) is not worth the billions of dollars a pharma company could get as a reward.

 

[Thorbamse]

But the chances of finding significant relief or a cure are so drastically low that the risk involved in going through a decade of trials (which in addition to time, costs lots of money) is not worth the billions of dollars a pharma company could get as a reward.

I get where you're coming from, but I for one do not totally agree. First, we do not know how drastically low the chances are of finding a cure or at least some sort of treatment. Look at the result Trobalt has had for a few members here. It might not be the golden ticket, but maybe it can lead other pharmaceuticals/scientists in the right direction, only time will tell. Second, time and money is exactly what pharma companys are willing to spend in order to reap a profit, so I don't really get your point? Hell, isn't investing money and taking chances what drives most companies anyway? If no one took chances and invested capital to ultimately gain profit I think financial growth would grind to a complete halt rather fast.
Lets say it will take 15 years and 400 million dollars to develop a pill that reduces symptoms. But after development and trials, you're left with 100 million people, maybe a lot more, having to spend lets say 200-400 dollars a month (or even more) for the rest of their lives, hypothetically on average 25-30 years. You do the math But I do not own a crystal ball thus I cannot look into the future. I'm not saying i'm right and you're wrong nor am I trying to start an endless discussion, let's just wait and see what happens.

 

[Lloyd Carter]

I get where you're coming from, but I for one do not totally agree. First, we do not know how drastically low the chances are of finding a cure or at least some sort of treatment. Look at the result Trobalt has had for a few members here. It might not be the golden ticket, but maybe it can lead other pharmaceuticals/scientists in the right direction, only time will tell. Second, time and money is exactly what pharma companys are willing to spend in order to reap a profit, so I don't really get your point? Hell, isn't investing money and taking chances what drives most companies anyway? If no one took chances and invested capital to ultimately gain profit I think financial growth would grind to a complete halt rather fast.
Lets say it will take 15 years and 400 million dollars to develop a pill that reduces symptoms. But after development and trials, you're left with 100 million people, maybe a lot more, having to spend lets say 200-400 dollars a month (or even more) for the rest of their lives, hypothetically on average 25-30 years. You do the math But I do not own a crystal ball thus I cannot look into the future. I'm not saying i'm right and you're wrong nor am I trying to start an endless discussion, let's just wait and see what happens.

Pharma companies are already extremely profitable the way they run. They generally (not always, but generally) will only go through these trials when they are much more sure about the disorder. Why do you think there are so few pharma companies trying to cure T? We don't know a ton about it! More than ever before, yes, but we still have so many unanswered questions. Now take something like Epilepsy, on the other hand, for example. They ALREADY KNOW Trobalt can be effective. So they just make a little change to it (SF34!), and it's worth the risk, because if it works, they make bank. Tweak an existing drug about a disorder we have treatment for--pharma happy. Go into unchartered waters for a disorder that NOTHING is proven to give relief to (yes, Trobalt is still very unproven), not worth the risk. These companies don't care about us sufferers. They care about making money. Let me end by saying I love what this thread is doing and am praying we have a cure ASAP! I'm on your side! But just hate pharma!

 

[Mic]

Lets say it will take 15 years and 400 million dollars to develop a pill that reduces symptoms. But after development and trials, you're left with 100 million people, maybe a lot more, having to spend lets say 200-400 dollars a month (or even more) for the rest of their lives, hypothetically on average 25-30 years. You do the math

As thorbamse have said it rightfully... just do the math. Lets say only 10% of the 1% with T uses this new medicine that can cure the condition with only an one time treatment. This will make 7 million customers that each pay 50 dollars a treatment. With this the revenue comes to a total of 350 million dollars.

Did you follow the business potential of a cure for T with the modest scenario I described above? Well... in real life you could expect more:

• More patients (aka customers): If a medicine works for T more than 10% of the 1% of people with the condition will use it (also people with temporary T and new T sufferers each year).
• Life time use intead of one time treatment. It is more probabel that a new medicine will target the symptoms and will not directly cure the cause. (the 350 million dollar above will be a monthly reveneu instead of an one time reveneu).
• Higher break even point for willingness to pay the treatment. You can expect that 90 % of people with T are willing to pay more than the 50 dollar for treatment that is mentioned above.
• Additional benefits of research: It is likely the research that is necessary for a new medicine will bring new insights for related neurological conditions. (new potential leads for curing other conditions).

Honestly I don't think it is important that companies care about us suffering. I see a win-win-win-win-win-win situation that will bring a gold mine for succeeding companies and silence for T sufferers.

 

[Markku]

As some folks may have seen, during yesterday and today we, kudos to @attheedgeofscience for starting this thread and offering advice and insight, have run a little research awareness campaign here on the forums as well as on Facebook.

Specifically the below update on Facebook was highlighted:



Currently (as of 7:20 UTC, October 20th, 2015) it has accumulated 86 likes and 36 shares (with 5,000 people "reached", i.e. people who saw the update).

As of this writing, our Facebook Page has 2,270 fans.

Let's compare this to GSK's Facebook Page:

GSK has 166,641 fans. Almost 75 times more fans than we do.

For demonstration purposes, one recent update of theirs has 69 likes and 13 shares.

So, the two fan bases compared, our campaign has done exceptionally well.

Question is, has this translated into something concrete yet? Nope, but who said advocacy work is a quick process. It will take patience and persistence. At least we're doing something and not resting on our laurels.

I invite everyone to read the first post of the thread by @attheedgeofscience and think about ways to further raise awareness. And then take action. One person can do more than they think.

We also welcome members to join our Team Awareness and/or other teams.

Some people (@Mic et al.) have provided interesting thoughts — however we aren't saying this specific campaign is the be all and end all. And those who know our efforts from before, we have indeed been building contacts and engaging in outreach for a long while now, including researchers, pharmaceutical companies, celebrities as well as journalists and other key people and organizations. I await the day when the hard work has borne some fruit. And if it doesn't (even though I consider getting the word out on tinnitus a victory in and of itself), we will die trying. So to speak.

I'm very proud of everyone involved — thank you.

 

[Joshua]

I'm only an occasional visitor to TT but I'd bet a lot of folks like me are willing to become more active if we think there's a realistic chance of getting more attention and $ for T research. It would certainly make me feel a lot better to know I'm doing something, instead of just waiting to habituate.

I work at a policy advocacy organization and I agree with both @Mic and @Markku . As @Mic states well, the goal would be to create a window of opportunity for a decision to be made, which is to support funding for tinnitus research. To do that, we'd need to understand whom to reach out to, how to get to them, and what will convince them. Part of convincing the decision makers is to demonstrate that there is popular support in favor, which means raising awareness and making tinnitus a part of public discourse, which is what @Markku is writing about.

Ideally, these two streams need to be connected and coordinated as much as possible, as that would, eventually, lead to the greatest policy impact.

I think this forum is best positioned to engage in more public awareness, as that is outreach to decision makers usually requires a consolidated organization that develop a long term strategy for developing relationships and lobbying those target groups. But there is opportunity to work together on both. I don't know much about orgs like ATA but part of their mission is to advocate for research, primarily from the US government. Has anyone on TT been in contact with them about building a substantive public awareness and policy advocacy campaign? What about other public health or veterans groups, in US, Europe, or beyond, or celebrities who can act as spokespeople?

I'd think there should be a way to make common cause, agree on some core principals, goals, and objectives. Worth trying? If it is, then I'd say the folks of TT would want to work out an outreach plan to these organizations, first, with some concrete suggestions for working together.

this is a more philosophical question but should the goal be funding for Trobalt or funding for fundamental T research that may yield a permanent cure? If I was a billionaire with the money to invest, I'd do both - invest in fundamental research, since we'd all better with a permanent cure that addresses the underlying causes of T, but also invest in promising interim solutions that may alleviate the symptoms for a vast number of potential consumers.

Josh

 

[attheedgeofscience]

Update On Awareness Campaign & Strategy Going Forward

Approximately one month has passed since the Autifony QUIET-1 study was terminated and the awareness campaign for further research into Kv-channel openers was launched (see first post in this thread).

What has happened since then? Below a brief summary of that:

• Prof. Moore's paper on the four Kv-channel openers (incl. Trobalt) has been read approximately 3,500 times (unique reads).
• The social media update related to this thread has been rated +100 times and shared some 50 times on Facebook. This is well beyond what updates published by giant pharmaceuticals such as GSK and Pfizer would obtain (on average) despite a much much larger follower base (@Markku and myself have been hard at work using innovative marketing approaches to achieve such high ratings).
• Several members of Tinnitus Talk have stepped forward and volunteered their help. The help offered has been different than the help we have seen in the past: this time real, beneficial, and committed help has materialized. Indeed a number of PM-groups have been set up - special thanks to members such as @Onnie, @valeri, @DebInAustralia, @Hope2015, as well as the [USERGROUP=4]@Moderators[/USERGROUP] of Tinnitus Talk. This is work-in-progress, but I am confident that some kind of further awareness in the form of a video or animation will see the light of day in the future.
• Lastly, and perhaps most importantly, @Markku and myself have seen a significant shift in the number of ratings given to Facebook-updates by members and visitors of Tinnitus Talk. We easily achieve some 40, 50, or even 60 ratings for the Facebook-updates related to science or clinical trial developments. These updates have proven to be very popular and the ratings reflect that. From our side, we will promise to continue to bring the very best, most accurate, and most newsworthy info on developments going forward - often information directly from researchers or pharma companies.
• In relation to the bullet point, above, we have developed an internal PM-distribution list with members from Tinnitus Talk. It is no secret that our biggest asset is the number of members and visitors, and so whenever there is a science update, we will PM those members who wish to be informed of such developments. In turn, you the member, can then choose to rate/share/comment the update on Facebook. Ask @Markku to be added to the list. Thanks for your help in spreading awareness.

Thanks for taking the time to read this update!


attheedgeofscience
13/NOV/2015

 

[attheedgeofscience]

Please remember, this thread is - as stated - only dedicated to relevant input (i.e. input from members who wish to contribute):

Contribute means: people who wish to get involved and who understand that it requires a certain workload and who are self-leading. Really good ideas that are thought through are also welcome. As is input from members who may have relevant connections (e.g. connections with celebrities). This in fact happened with the awareness campaign @Markku and I created - if you run through the list of people who rated our post you will see something that we have not seen before for any update by TinnitusTalk (as far as I know) - a rating by a verified account (Fábio Zugman):

Last but least: the biggest personal asset an advocate can have is self-leadership.

attheedgeofscience
14/NOV/2015

 

[Pulsingeflat]

I have made a short film about tinnitus which may help an awareness campaign.

 

[Dima]

Is there a facebook post that just explains what tinnitus is? That would be great. Just sharing and liking that would raise a lot of awareness.

 

[Markku]

Is there a facebook post that just explains what tinnitus is? That would be great. Just sharing and liking that would raise a lot of awareness.

Yes, thanks to @Onnie and her boyfriend, a fantastic animation is being worked on that might become "the next big thing" when it comes to tinnitus on the social media We are hoping to have it ready before BTA's Tinnitus Awareness Week 2016 (8-14 February), but it may take longer since it is a lot of work.

Also we do have this Sounds of Tinnitus video that has been relatively popular: