[Danny Boy Memorial Fund] The Vote Result and a Discussion on How to Implement It

[Greg Sacramento]

@Starthrower Thank you for your acknowledgement for my above postings. Healthcare costs, tinnitus and auditory healthcare awareness, including many aspects such as coping and device cost assistance seems to be better in England and Europe. I don't know much about healthcare in other countries, but I have many US accreditations as well as awareness of medical research funding.

NORD USA considers tinnitus a rare disease. Many chains of hospital in the USA consider tinnitus with less valuation than it appears to be in England and Europe.

Travel times for treatment within the USA can be long and it can sometimes takes months before a patient can be seen. This may be the same in Europe, I don't know.

In some ways, the BTA seems to be more friendly than the ATA. Thank you David for Danny's recognition and being so personnel in coming here to discuss tinnitus.

 

[TuxedoCat]

The theory goes that the brain is always making predictions of what is going to happen, based on experience and learning. This helps us in daily life. When it learns something new it updates the model so that it can predict future events better, and likewise where there are gaps it makes predictions to fill these in based on previous experience and input.

Hello @Steve

I read Dr. Sedley's paper about his brain theory of tinnitus. It was a great way of spending a Sunday afternoon! I'll admit to having only a rudimentary understanding - it's been too many years since I took neuro in school.

It's fascinating stuff, I wonder if others in the tinnitus field are sparking to his theory. The paper is 2 years old and if I recall you reported on this work after the last TRI conference. What was the reaction to his theory? Was there a good discussion around it? Did others like Rauschecker take part?

I can see now that the prediction model is about prediction coding in the brain. Coding in the brain is similar to coding or programming in a computer language. It's the way neurons talk to each other by way of their arrangement and how much, how often or how many neurons release neurotransmitters that communicate with the next neuron and initiate it to fire. So if you were to try one of those interdisciplinary meetings including a friendly, open minded and confident computer programmer might be interesting.

I also watched a couple of YouTube videos that were made during one of Dr. Sedley's presentations to a tinnitus group. He seems a very personable and concerned individual- definitely doesn't need an attitude adjustment! I hope he plans to continue to research tinnitus, the field needs more like him.

TC

 

[David]

Thanks @Steve. Are there grad students working there with him? Or he may have suggestions about students for the fund allocation from Tinnitus Talk?

No - right now he's spending 1/2 of his time on this, with no other support.

NORD USA considers tinnitus a rare disease.

Bizarre considering it is at 'epidemic' levels (1 in 10 conservatively).

I hope he plans to continue to research tinnitus, the field needs more like him.

Absolutely agree, he's bringing new exciting ideas and is doing the spadework to (try) and prove them. Good guy all round! My opinion on how his theory is being recevied currently is there is some scepticism about it, due to it being hypothesis currently and needing to be proven. Think it will be taken more seriously when/if data backs it up. @Steve may have a different take on how it's been received.

Thanks for the forms @TuxedoCat a lot of the heavy lifting has been done there, making the next steps relatively straightforward.

 

[Steve]

I'll admit to having only a rudimentary understanding

You and me both. He is very good at presenting things in an understandable way but much of it is out of my comfort zone.

What was the reaction to his theory?

I think that it's potentially controversial, not too sure how much acknowledgement it has got. After all the theory says that many studies were correct in a way but also that they are on the wrong track.

For me it's not something I hear talked about much around the research community, which is a real shame. Will has put a lot of work into it and I feel like he is onto something. At the moment he is a relatively lonely figure, I would love for that to change.

I do have one thought on something that could be a fundable project and which could also yield a paper, but I would need to check with Will just how much funding and time it would take. We could also do some of the groundwork here at Tinnitus Talk and provide help in gathering participants.

I personally like the idea of being able to augment the fund by the community helping out in some way with the project.

 

[TuxedoCat]

Thanks for the forms @TuxedoCat a lot of the heavy lifting has been done there, making the next steps relatively straightforward.

@David I enjoyed working on them. I would hope that we can see the web page before it goes live, to be sure everyone is on the same page with the bits about a path to a cure. I still feel like we're getting sucker punched, although the blows are not as forceful as before. TC

 

[Starthrower]

@David

No - right now he's spending 1/2 of his time on this, with no other support.

Absolutely agree, he's bringing new exciting ideas and is doing the spadework to (try) and prove them. Good guy all round! My opinion on how his theory is being recevied currently is there is some scepticism about it, due to it being hypothesis currently and needing to be proven. Think it will be taken more seriously when/if data backs it up.

Okay. Do you know my friend Dr. Billy Martin and his wife Jennifer Martin with University of Singapore? He and his wife left OHSU in Portland Oregon to open the first tinnitus clinic on that side of the world. He often works in brain surgeries. Will Sedley may want to contact him. If so - just mention Bob and Jen in California in his opening communication with him.

 

[Starthrower]

@Starthrower Thank you for your acknowledgement for my above postings. Healthcare costs, tinnitus and auditory healthcare awareness, including many aspects such as coping and device cost assistance seems to be better in England and Europe. I don't know much about healthcare in other countries, but I have many US accreditations as well as awareness of medical research funding.

@Greg Sacramento we are on the same tract here. I tried to take care of this in 2004. Health care is is sadly getting worse. Doctors are timed the minute they walk into the room with the patient. For several years I worked with others raising funds for health care needs for tinnitus people who did not have financial means of any sort. Long story....

I admire your information and experience.

 

[Ed209]

Hi everyone, this is our latest call draft for you all to review. If any of you have any suggestions, please comment below. If you are all happy with this then we will go ahead and implement it.

 

[Deamon22]

Looks great to me, thanks for all your effort Ed and everyone helping . I hope we will get to at least £5.000.

 

[Ed209]

Now it works, thanks. Looks great to me, thanks for all your effort Ed and everyone helping . I hope we will get to at least £5.000.

I was hoping we'd get to £10k, but it just wasn't meant to be. However, what we have collectively achieved is amazing, and even with £4.5k, we can still get something done.

 

[Ed209]

The call is now live and can be accessed via this link:

https://www.tinnitus.org.uk/blog/daniel-ballinger-memorial-fund


Please help spread the word so we can get potential candidates to see this and apply. Donations are also welcomed until the deadline on the 31st of December.


https://www.gofundme.com/lets-cure-tinnitus-and-hyperacusis


This is a chance to leave our mark on the tinnitus world in Danny's name.

 

[Starthrower]

Thanks to the BTA @David for their hard work on this fundraiser for Danny created and overseen by @Ed209.

This is a wonderful effort and it will be interesting to watch the results as students apply for the grant money.

 

[Starthrower]

Lots of luck to you all. I wish you success.

Thought I could somehow make a difference once again. It will never change.

 

[Ed209]

The fund is no longer accepting donations and all donors should have received an email earlier today to explain why.

Due to the nature of the call, we realised that we need to keep to a set figure so as not to overly complicate things. It's unfair to allow people to continue donating when the grant is going to be paying out £5k. The leftover amount would be left in limbo, so if you were thinking of donating, I'd advise waiting for the next campaign.

@Starthrower, if you didn't see the email earlier then I hope this explains things. I'd like to thank you for your offer - which was extremely kind - but in this instance your money would fall between the cracks and there will be a better opportunity for you to donate in the near future.

I would like to sincerely thank all of you for your generosity and for allowing us to achieve what we have.

We did this for you, Danny Boy. You will never be forgotten, and your name will live on in the research we create. RIP.

 

[jimH]

@Ed209 ...

I just want to thank you for setting up and managing this fund, in Danny's honor, to the end. In time, it will bear good fruit, for sure.

You're a great guy with a big heart and it's been a pleasure getting to know you better during the course of it.

Well done and thanks again!

 

[Deamon22]

@Ed209 you can be very proud, you did a good thing, motivating a whole community to fund such a project. We all have now seen how hard it is to collect funds for tinnitsmus. Well done

 

[Ed209]

@Ed209 ...

I just want to thank you for setting up and managing this fund, in Danny's honor, to the end. In time, it will bear good fruit, for sure.

You're a great guy with a big heart and it's been a pleasure getting to know you better during the course of it.

Well done and thanks again!

You're too kind, Jim. If this was a stock you'd be a listed stakeholder along with a few other key contributors, but at the end of the day, it's always been a community effort.

This has demonstrated, on a small scale, what we can do if we all put our minds to it. Every donation and every like and share has contributed greatly towards the outcome. And now we are onto the next phase: actively seeking a worthy recipient to accept the grant and hopefully produce something we can all be proud of.

I've said this many times over, but I'll say it again: success breeds success, and we all have the power to influence the world. No matter who you are or what your status is.

A pebble is tiny and insignificant, but drop a load of them into a torrent of water and they have the power to stop it. Suddenly, they become significant. We are the pebbles.

I agree with what Steve Jobs says in this clip. When it sinks in, what he is saying is quite profound:

 

[glynis]

Great work @Ed209,
A great memorial for Danny Boy...
love glynis xxx