[Danny Boy Memorial Fund] The Vote to Decide Who the Beneficiary Should Be

We are going to allow everybody to have a vote, however, only donors’ votes will count towards the final decision. We will do this by asking donors to post a comment, either here, or by PMing @Ed209 with their choice and the name they donated under. Once this is crossmatched with GoFundMe, that vote will count towards the final decision. So, if you want your vote to count and to have your say in this, please make a small donation and leave your username on the GoFundMe campaign page.

Once the poll has finished, we will have a general vote result and a donors’ vote result. Donors can then decide if they want to take the general vote into account or not, or simply go with the result of the donors’ vote which is the one that matters!

The descriptions below are in voting order:

• Dr Susan Shore leads a team who have invented a signal timing device that aims to reduce or eliminate tinnitus. Susan believes that tinnitus derives from the dorsal cochlear nucleus, where neurons called fusiform cells become hyperactive and synchronise with one another. She believes that some maladaptive plasticity occurs and that we begin to perceive tinnitus when this phantom signal is transferred to other areas of the brain. Her device uses earbuds and electrodes to disrupt this process, and it targets somatic tinnitus (according to Dr. Shore, approximately 2/3 of tinnitus sufferers belong to this group). https://medicine.umich.edu/dept/khri/susan-e-shore-phd

• Sonic Lab use a process they call Multimodal Synchronization Therapy, which is another way of disrupting abnormal brain activity. They believe it could be used to potentially treat various neurological or psychiatric disorders including tinnitus. mSync seeks to achieve noninvasive yet targeted neuromodulation by taking advantage of the dense and topographic interconnectivity of the nervous system in which the brain integrates information across auditory, visual, somatosensory, motor, cognitive, and limbic pathways. http://soniclab.umn.edu/research/neural-beamforming-tinnitus

• Another option is to invite organisations/researchers by putting out a call for them to submit their project ideas. We can look at these prospects based on merit and choose the applicant we like best. For more information on this, @David may be able to help.

• Prof Thanos Tzounopoulos also believes that tinnitus arises in the dorsal cochlear nucleus. Their work has shown that this is caused by a reduction in tiny channels called KCNQ channels, through which potassium ions travel in and out of the cell. He is developing novel compounds that will attempt to reduce this channel activity, and in return, reduce the perception of tinnitus. http://phrc.pitt.edu/people/thanos-tzounopoulos

• A member here, @kelpiemsp, proposed this idea: we could look at a scholarship for a student studying tinnitus. This would exempt the institution and the faculty. While research that pays a faculty professor is extremely expensive, many papers are actually researched and written by the graduate student and the faculty just reads it and puts their name as first author so it gets published. A 5,000 dollar scholarship to a student studying tinnitus would get quite a few applications worldwide and if we went this route, we could realistically request a paper.

• Dr Brian Allman of Schulich Medicine is another option. I’ll post some information directly from his page: how does the brain adapt (or mal-adapt) when it is deprived one of its senses? My previous research using animal models has shown that partial hearing loss, which denies the auditory system the full spectrum of sounds normally accessible from the environment, causes a dramatic increase in the proportion of neurons in the auditory cortex that respond to visual and tactile stimuli. Future studies will determine the consequences of this “crossmodal plasticity” on auditory- and multisensory behavioral tasks. Ultimately, rehabilitative therapies aimed at restoring hearing may be complicated by factors involving such crossmodal plasticity. Using electrophysiological recordings in a rodent model, my ongoing research seeks to determine how aberrant cortical plasticity contributes to tinnitus. Additional studies are devoted to identifying risk factors that may increase one’s susceptibility to developing chronic tinnitus following loud noise exposure. https://www.schulich.uwo.ca/anatomy/people/bios/faculty/allman_brian.html

• Another member proposed that we invest in developing better diagnostics. The way to do this has not been proposed yet, so if this is the most popular choice, we would have to discuss how.

• Prof Josef Rauschecker is another possibility. Again, I’ll post information about his work directly from him: Dr. Rauschecker's research interests are functional organization and plasticity in the central nervous system. His research aims to explicate the brain's means of implementation for auditory perception and language. His laboratory is one of only a handful in the country engaged in the neurophysiology of auditory cortex in nonhuman primates. In parallel studies, he is using functional magnetic resonance imaging (fMRI) in humans for the study of the neural bases of language, music and other higher auditory processing. This work should lead to a deeper understanding of brain function in autism, dyslexia, aphasia, agnosia and tinnitus, and more intelligently designed hearing aids and neural prostheses. In this context his laboratory is also interested in the effects of sensory deprivation during brain development, relating to the question of how the brain of individuals with early blindness or deafness gets reorganized. These studies of brain plasticity have relevance for the understanding of degenerative diseases of the brain, such as Alzheimer's disease. https://linc.georgetown.edu/josef-rauschecker

• Hough Ear Institute was proposed by @Contrast. Here is the overview from their site: At Hough Ear Institute (HEI), our mission is to restore hearing worldwide through research, teaching and humanitarian efforts. Our researchers focus on sensorineural hearing loss, exploring its causes, prevention methods, reversing its damage, and ultimately restoring natural hearing in the inner ear. http://houghear.org/support-hei/

• Hearing Health Foundation was also proposed by contrast. Interestingly, if we raised more money they offer this option: HHF's special “Named Research Grants” Program enables donors to fund a research project and name the grant in their name or in honor or memory of a loved one.For a minimum gift of $30,000, you can create your HHF named research grant and help choose the research topic to be investigated. https://hearinghealthfoundation.org/donate

• Neuromod is another option, and interestingly, Berthold Langguth - a speaker at the Tinnitus Expo - is an advisor. They have also developed a bi-modal neuromodulation device. Here’s some information from their site: Neuromod has developed and patented a bi-modal neuromodulation technology that it is evaluating for neurological disorders including chronic tinnitus, a condition affecting 10% of the adult population and commonly known as 'ringing in the ears'. https://www.neuromoddevices.com

So, there we have it, folks. These are the options we will be voting on, but before you vote, I’d advise doing a little research on each option. If for some reason the winning choice ultimately ends up being unimplementable, then we will default to the next most popular choice.

 

@Ed209 Thank you so much for all your incredible good work with setting up this fund in Danny´s honour.

The options for who to receive it are all also very relevant and well thought through.

I went for the Greek, even though his research is not aimed directly at tinnitus, I believe it is very much in Danny´s spirit and probably our best shot should regeneration fail.

Thanks again!

 

Great job, @Ed209!

Although, I'm a little disappointed that my research and experiments into regenerating human life was not included..






I'm going to take some time to do some additional research regarding some of the choices.

 

@Ed209,
Well done for all your hard work!

I voted Prof Thanos Tzounopoulos

love glynis

 

Thanks so much for all the work @Ed209!

I voted for the above thinking about the involvement it would create with different researchers. A good way for the word to get out there among the different organizations involved with anything tinnitus.

 

I went with number three.

 

Thanks @Ed209! I donated and I voted for Hough Ear Institute.

 

Oh also I'm very glad that TRT research is not presented as an option
(to be very clear, I'm dead serious here, I do NOT want TRT research as an option for funds)


Ok...and now,
--- cue sh*tshow in 3...2...1... ----

(just kidding around with this part... sort of...)

 

@Ed209 my name as it appears in GoFundMe is Amit Kumar Shah and I voted Prof Thanos Tzounopoulos. Thanks all. I'm glad you made this list with great thought.

 

Hi grate_biff, can you PM me with the name you donated under? Cheers buddy.

 

Looking at my experience with Trobalt I would like to give this money to Prof Thanos Tzounopoulos, at least with £4000 he will by some cheap mice.

 

Sorry for my ignorance. But how does one PM. Haven´t really done that before

Is it by starting a conversation? Is there an easier way?

 

Yea, click on start a conversation, or you can post it here. I assumed you may want to post anonymously.

 

Did you ever figure out a way to get this money directly to the researchers instead of the universities taking it?

 

No, we need to look into it.

 

@Ed209

I voted for Prof Thanos Tzounopoulos.

 

VOTE HOUGH EAR INSTITUTE

they will find treatments for tinnitus and hearing loss and possibly more!

 

I voted Prof Tzounopoulos but I’m happy with whatever majority decides, as long as the money is not going for mindfulness research, I’m not fussed!

 

They sound interesting, i wrote them an e-mail asking for a bit more information.

 

Hi Stakovic, what name did you donate under?

Just a note for all future comments: if you’re a donor can you please write your choice and then the name you used to donate otherwise it will take me forever to tally the votes up. If anyone wants to remain anonymous you can PM me (click on my name and then click ‘start a conversation’).

 

With kindness and respect to my friends: The reality of non profit and non profit for profit is not understood unless you're a healthcare financial analyst or a tax attorney. The popular fund choices that have the most support fall into the category of which cup is the yellow ball under.

Two popular funding ideas have an open checkbook from their medical schools and then from allocation from other university accounts which total billions of dollars. Our funds given will be like a glass of water being thrown into a flowing river with more than one inlet. I also have a bad taste knowing the medical and insurance costs for being treated for any condition at their medical schools. For this I will not vote.

I still rather see the fund used for those who can't afford a mouth guard or such. A fund for this purpose could be managed by the BTA by one employee with total time spend of one hour a week for a few months until the funds are depleted.

 

Donation name: Peter Dodge. I vote for Prof Thanos Tzounopoulos

 

Since other donors have declared their vote, I’ve decided to declare mine. I voted to fund a student scholarship as I believe this is the best way to get something out of the small amount we have. In my opinion, it provides significantly better bang for our buck, and we may see something in return.

But this has always been a democratic process and as I promised, everyone has had an opportunity to have their say.

 

There's already thousands of research articles on the internet. Many blogs and articles of personal experiences have also appeared within national and local newspapers within the USA.

I have given a few bucks to a few that couldn't afford a mouth guard and I felt good with doing that.

 

"Despite exciting new theories being developed about the causes of tinnitus in the brain, the field is stagnating in terms of therapies. What could be done to come up with new treatments that give patients new hope for escape from a state that they sense as inescapable?"

These are the opening sentences from Josef Rauscheckers TRI Conference abstract.

Why is the field stagnating?

One thing I've learned from the campaign for Danny is that there seems to be money around, at least in the US Universities and maybe from the US Department of Defense. For example, Jeremy Turner, who is on the ATA Scientific Advisory Committee had a $1.5 Million grant from the US Department of Defense to develop an objective measure of tinnitus.

I'm beginning to think the issue is not necessarily a lack of money for research, but lack of inspiration and a sense of urgency among the researchers. Or, maybe it's a lack of cohesiveness among researchers? Lack of coordination? Need for facilitation?

Is anyone else getting this impression?
TC

 

@Ed209 I know that you worked very hard on this pledge. I just can't support any of the choices. All the entities have money in the bank, except the scholarship one.

Some very good colleges in the USA offer free education. Financial aid and scholarships are very easy to obtain. There's billions of dollars available for medical research, but there isn't for the compassion care aspect. What I feel is needed is to convince those with medical research funds to consider valuable tinnitus study, not just on compounds such as zinc for the DCN.

I know that my past employer would had matched my donation dollar to dollar if it was for a compassionate cause such as for those who can't afford hearing aides or a mouth guard. All large corporations would also match dollar to dollar.

https://affordableschools.net/20-tuition-free-colleges/

 

Our own fund would be good to help members out whom struggle to find money for hearing aids etc and could apply for money from the fund...

 

Me too. I think it's very 'Danny Boy'. He was one hell of an amateur researcher and usually for others.

 

It's a laudable choice, but it doesn't fit what the donations are earmarked for, which is research for a cure. In other words, things that do not qualify as "research for a cure" are off the table, no matter how great they are.

Given your insights on existing charities & funding (you seem to have first hand data), where do you see small funds making the biggest difference, given the constraint stated above?