[Danny Boy Memorial Fund] A New Frontier In Patient Driven Research

[Hazel]

We're so pleased to announce that a beneficiary has been picked for the Daniel Ballinger Memorial Fund. The fund donors - all tinnitus patients - assigned the GBP 5,000 grant to Ms. Elouise Koops (PhD) of Groningen University.

At Tinnitus Hub (the managing entity of Tinnitus Talk) we feel very passionate about direct patient engagement in tinnitus research, and this fund is truly a prime example of that. None of it would have happened without @Ed209.

You can read more about the fund and the research in our blog post, where you'll also find a video interview with Ms. Koops.

 

[Starthrower]

Great job @Ed209 and the BTA. And Tinnitus Hub.

Ms. Koops was so sincere and thankful she was chosen for this grant. That was cool because it gives meaning for each of us who donated towards the grant. And mostly because of @Ed209 Danny's memory will always live on making others with tinnitus/hyperacusis feel better in some way.

 

[Julien87]

Thanks a lot Ed and everyone else who contributed.
Congrats and my encouragements to Ms Koops!

 

[Markku]

Congratulations Elouise! I look forward to hearing more about the research - and I'm sure we'll have more updates to share from her as she progresses along. She's the program manager of TIN-ACT so we will definitely meet her again at one of those meetings.

I also want to thank @Hazel for not only taking time off her day work and attending the recent TIN-ACT meeting but also, being the star she is, being able to organize, direct and film Elouise for our interview! From filming to editing & publishing the video, it took us a record breaking 30 hours or so! What a fantastic effort.

 

[Starthrower]

I also want to thank @Hazel for not only taking time off her day work and attending the recent TIN-ACT meeting but also, being the star she is, being able to organize, direct and film Elouise for our interview! From filming to editing & publishing the video, it took us a record breaking 30 hours or so! What a fantastic effort.

@Markku and @Hazel
The personal time and efforts you both spent for this important milestone of creating the first support group grant is the reason I so wanted to dedicate this fund drive for Tinnitus Hub/Tinnitus Talk so that those of us who are able to contribute to the costs can help take up some of the personal finance you both give to the community.

https://www.tinnitustalk.com/thread...embers-can-raise-the-same-amount-first.33451/

It is not too late to give.

Hazel your interview is beyond perfect if that is possible. And you did this on your own time.

Markku you spent so much of your own time with editing!!

Ms. Koops interview was such a beautiful outcome for the cause.

 

[GregCA]

Congratulations Elouise! I look forward to hearing more about the research - and I'm sure we'll have more updates to share from her as she progresses along. She's the program manager of TIN-ACT so we will definitely meet her again at one of those meetings.

I also want to thank @Hazel for not only taking time off her day work and attending the recent TIN-ACT meeting but also, being the star she is, being able to organize, direct and film Elouise for our interview! From filming to editing & publishing the video, it took us a record breaking 30 hours or so! What a fantastic effort.

Great job everyone! Props to all of you.

Elouise seems like a brilliant young lady. She will do great.

 

[Hazel]

The personal time and efforts you both spent for this important milestone of creating the first support group grant is the reason I so wanted to dedicate this fund drive for Tinnitus Hub/Tinnitus Talk so that those of us who are able to contribute to the costs can help take up some of the personal finance you both give to the community.

@Starthrower with your fund drive, you singlehandedly managed to cover a significant chunk of our running costs for the year (e.g. server fees, domain names, software subscriptions)! THANK YOU SO MUCH!!!

Of course any additional donations will go into our projects like videos, podcasts, etc.

 

[carlover]

Poor old Danny... If only we could have gotten to him... I would have driven to see him, Bristol wasn't it... 120 miles down the M4 from London. I could have gotten hold of him, hugged him... What an absolute tragedy.

 

[PDodge]

It's very sad, and thanks everyone here for your hard work. Looks like an excellent candidate was chosen.

@carlover, we all would have liked to be there for Danny but I think he died in his sleep or something... please correct me if I'm wrong but there was no self-harm involved.

 

[derpytia]

It's very sad, and thanks everyone here for your hard work. Looks like an excellent candidate was chosen.

@carlover, we all would have liked to be there for Danny but I think he died in his sleep or something... please correct me if I'm wrong but there was no self-harm involved.

The official word was Sudden Adult Death Syndrome (SADS).

 

[JohnAdams]

The official word was Sudden Adult Death Syndrome (SADS).

Maybe from stress?

 

[just1morething]

Maybe from stress?

Could have been from Trobalt. PDR on Potiga mentions possible cardiac arrest according to a psychiatrist I had seen back a few years ago. He would not prescribe it to me because of that and also he had no familiarity with it.

 

[JohnAdams]

Could have been from Trobalt. PDR on Potiga mentions possible cardiac arrest according to a psychiatrist I had seen back a few years ago. He would not prescribe it to me because of that and also he had no familiarity with it.

Damn.... so sad.

He was obviously well informed and interested in research. A very intelligent guy. I wish he were still around to give me his feedback on all the stuff I've been into. He died somewhat shortly after I joined the forum. I feel like we lost a valuable asset in this struggle.

 

[just1morething]

Damn.... so sad.

He was obviously well informed and interested in research. A very intelligent guy. I wish he were still around to give me his feedback on all the stuff I've been into. He died somewhat shortly after I joined the forum. I feel like we lost a valuable asset in this struggle.

Your method was a lot better than some of the dangerous DIY methods used by some members in the past. Trobalt had a black box warning from the FDA. With this tormenting condition I don't blame people for trying just about anything for relief though. I mixed and matched a lot of drugs and supplements myself.

 

[erik]

I was gone from the forum for a while but remember my numerous interactions with Danny Boy, RIP!

 

[Philip]

Jesus I remember how flippant and pissed off I was with the cavalier attitude Danny Boy had towards obscure research chemicals and other meds for tinnitus.

As someone who nearly died three years ago of substance abuse related to my tinnitus I should have been on here supporting people more.

But I had learned to live with my tinnitus and avoided this forum because it always made it worse. Thinking about it brought it back above that level of consciousness whereby it would begin negatively affect me.

I habituated and tried to forget and dissociate my inner self from the sound that is now actually in both ears.

Anyway there is hope out there for all of us and I think help is on its way but in the meantime let's learn to put that evil genie back in the bottle.

Condolences to Danny Boy and I'm very impressed with everyone who organized and contributed to his Memorial Fund.

 

[Hazel]

Jesus I remember how flippant and pissed off I was with the cavalier attitude Danny Boy had towards obscure research chemicals and other meds for tinnitus.

As someone who nearly died three years ago of substance abuse related to my tinnitus I should have been on here supporting people more.

But I had learned to live with my tinnitus and avoided this forum because it always made it worse. Thinking about it brought it back above that level of consciousness whereby it would begin negatively affect me.

I habituated and tried to forget and dissociate my inner self from the sound that is now actually in both ears.

Anyway there is hope out there for all of us and I think help is on its way but in the meantime let's learn to put that evil genie back in the bottle.

Condolences to Danny Boy and I'm very impressed with everyone who organized and contributed to his Memorial Fund.

Hi Philip, thanks for the feedback!

Did you ever write up your story in the Success Stories section? It's a relatively easy way of helping others.

 

[TuxedoCat]

Whatever happened to Elouise Koops?????????

We would love to hear from her.

It would take about 15 minutes of her time to log in and leave a post with a short update here on Tinnitus Talk. That's a lot less time than it took for us to raise the grant money!

 

[Hazel]

Whatever happened to Elouise Koops?????????

We would love to hear from her.

It would take about 15 minutes of her time to log in and leave a post with a short update here on Tinnitus Talk. That's a lot less time than it took for us to raise the grant money!

I contacted her, and we agreed on the following: She will write a blog post soon, presenting the current status of her work, mainly by showing and explaining brain imaging pictures. And then once she has more definitive results, we will do either another video or a podcast with her.

 

[TuxedoCat]

I contacted her, and we agreed on the following: She will write a blog post soon, presenting the current status of her work, mainly by showing and explaining brain imaging pictures. And then once she has more definitive results, we will do either another video or a podcast with her.

Thanks, that's awesome and a lot more than was hoped for! Glad to hear her work is progressing. -TC

 

[Ringeee]

Excuse me for asking, but how did this person pass?

 

[Hazel]

Excuse me for asking, but how did this person pass?

Hey there. We (Tinnitus Talk) have been in touch with Danny's sister at the time. An autopsy was conducted and cause of death was determined as Sudden Adult Death Syndrome. So basically his heart stopped without any known reason.

 

[Ringeee]

Hey there. We (Tinnitus Talk) have been in touch with Danny's sister at the time. An autopsy was conducted and cause of death was determined as Sudden Adult Death Syndrome. So basically his heart stopped without any known reason.

Wow, that's so sad and terrifying.

 

[MattS]

I contacted her, and we agreed on the following: She will write a blog post soon, presenting the current status of her work, mainly by showing and explaining brain imaging pictures. And then once she has more definitive results, we will do either another video or a podcast with her.

This is amazing. Amazing that the Tinnitus Hub community was able to find this, amazing that @Hazel and @Markku put in so much time for these causes, and amazing that a full-scale research project is occurring because of all of these efforts.

Is this expected to be a regular research fund? £5,000 is a lot of money for a graduate student, and can kickstart valuable research (though kick-starting an MRI study with that amount may be harder).

Fantastic work everyone.

 

[Hazel]

Is this expected to be a regular research fund? £5,000 is a lot of money for a graduate student, and can kickstart valuable research (though kick-starting an MRI study with that amount may be harder).

Thanks for the recognition, Matt! It was really driven by our member @Ed209 - a real advocate for the cause!

I think in Elouise's case she already had most of the funding, so ours was supplemental. It would be nice to really be able to fund a study that otherwise couldn't have taken place next time. And maybe raise a bit more, because the 5,000 was quite hard to get (the original goal was 10,000).

Yes, we are intending to do a repeat, probably in 2020

 

[MattS]

Thanks for the recognition, Matt! It was really driven by our member @Ed209 - a real advocate for the cause!

I think in Elouise's case she already had most of the funding, so ours was supplemental. It would be nice to really be able to fund a study that otherwise couldn't have taken place next time. And maybe raise a bit more, because the 5,000 was quite hard to get (the original goal was 10,000).

Yes, we are intending to do a repeat, probably in 2020

Amazing.

Sure, you can always try to improve on your funding process, but I think what you all did (recognizing @Ed209 as well) is fantastic. Five thousand is nothing to scoff at!

I'm pretty familiar with funding systems (I apply to funding opportunities multiple times a year, have won my fair share, and have sat on application review committees). So I know a bit about structuring mechanisms to maximize the likelihood of deliverables; how to adjudicate application quality, etc., etc. Not trying to bud in, but would be happy to offer suggestions for the next round, if they'd be helpful.

 

[Hazel]

Not trying to bud in, but would be happy to offer suggestions for the next round, if they'd be helpful.

Yes, that would be great, thanks!

 

[Badger19]

Her work focuses on how tinnitus manifests in the brain, and she seeks to find an answer to the question why not all people with hearing loss get tinnitus

For me, this could lead to crucial information.

Why do I have tinnitus when my clubbing friends don't? Why do they keep partying for years and never experience anything?

I have above average hearing (test done this week), yet I have tinnitus. Why do others who partied more than me and have hearing loss do not have tinnitus?

Very, very interesting research. Please keep us updated.

Also, we should do more fundraising. Tinnitus and hyperacusis can be cured if given sufficient funding!

Here is a link to Elouise's published papers. She has 2 papers on tinnitus.

https://www.rug.nl/staff/elouise.koops/research

 

[TuxedoCat]

I contacted her, and we agreed on the following: She will write a blog post soon, presenting the current status of her work, mainly by showing and explaining brain imaging pictures. And then once she has more definitive results, we will do either another video or a podcast with her.

Hi Hazel, I'm just wondering if this ever happened? I checked the Blog on Tinnitus Hub and didn't see anything from Eloise Koops. Maybe I misinterpreted what was meant by 'soon' so perhaps you can straighten me out on that. Thanks, TC

 

[Hazel]

Hi Hazel, I'm just wondering if this ever happened? I checked the Blog on Tinnitus Hub and didn't see anything from Eloise Koops. Maybe I misinterpreted what was meant by 'soon' so perhaps you can straighten me out on that. Thanks, TC

Hi there, thanks for checking. Elouise did submit something already a month or so ago, which she had obviously put quite a bit of effort into. However, I felt it was a bit too technical to publish as is, and offered to edit it for her.

Of course, I've simply not managed to find the time Volunteers welcome!