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Deafness and hearing loss > A suggestion for a regular newsletter on hearing restoration

londoner50
#1 Posted : Sunday, January 06, 2013 6:42:53 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
Hearing restoration seems to be one of the few games in town, there are quite a few labs working on this and many papers and findings are coming out. There is little in the way of clinical trials but we are inching towards them. I can imagine a lot are interested in this work as it has the potential to reverse tinnitus hearing loss and hyperacusis. Thats why i think a quarterly report would be useful giving the latest status and advances and whats on the horizon. Just on hearing restoration and biomedical research and perhaps new devices. i wonder could AOHL do this, might just mean getting some students to do a literature search and keeping up to date.

would anyone be interested in this?
RobmUNKNOWN1
#2 Posted : Monday, January 07, 2013 2:19:12 AM
Rank: Senior Member


Joined: 10/25/2011
Posts: 600
I'd be interested in a 'single' thread (perhaps tabbed by broad subject area) of latest developments in the past year or 2 - including technology - with perhaps some 'informed' feedback and linkage -
or just the links to the article - with some brief description of subject.

Different people are interested in different things - some in hearing aids - some in assistive aids - some in Tinnitus - Some in Deafness .....

E.g. Great that gerbils have had hearing partially restored - but .... when is it likely that humans have hearing restored ?
Also to correct tabloid news articles if 'wrong'
Also the fact that hearing is not just having functioning / repaired ear 'parts' - but all the associated brain development and learning that may be 'missing' and possibly NOT reversible - so management of expectations.
Deaf Access Research Group
#3 Posted : Monday, January 07, 2013 12:19:42 PM
Rank: Active Member


Joined: 11/12/2012
Posts: 208
you can get all the uptodate information you require by joining

www.sciencedaily.com

give them your email address and select what topics you want to keep up todate with eg tinnitus, deafness aids etc etc . you can chose as many as you like.

They will email you each time a new study is reported.


ian
Aaron (Helpline Officer)
#4 Posted : Tuesday, January 08, 2013 3:40:20 PM
Rank: Pro Member


Joined: 10/26/2011
Posts: 823
Hi All

Thank you for your comments

I have contacted our Biomedical research team who are pleased with the interest that has been shown and also mentioned that this has been considered recenlty within the depatment.

In the meantime please see our hearing progress report . If you would like to receive a copy of this report please email helpline@hearingloss.org.uk with your full postal address. You can also keep up to date with our latest research here Biomedical Research.

Best wishes
Aaron

Helpline Officer
Telephone: 0808 808 0123
Textphone: 0808 808 9000
SMS: 0780 0000360
helpline@hearingloss.org.uk
Cornishandy
#5 Posted : Tuesday, January 08, 2013 5:55:00 PM
Rank: Pro Member


Joined: 11/10/2011
Posts: 1,417
I like to read the pages in the magazine covering the latest research activities. Why not make it a feature?
londoner50
#6 Posted : Tuesday, January 08, 2013 10:56:18 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
One aspect of this that is very confusing is time to a cure.

I know this is a difficult subject but its very confusing when you hear it being reported as anything from 5 to 20 +years.

And you have projects that started some years ago as 10 years to a cure yet are still 10 years to a cure or more.

Its great to know the research is moving forwards by leaps and bounds sometimes, kind of 2 steps forward 1 step back.

like the discovery that atoh1 on its own may not be sufficient which has sparked off further research to find out what is.

and dr rivolta and the univ of sheffields gtoundbreaking work is hugely encouraging.

one thing i would like to know is what would expedite the search for a cure.

ie what would the scientists / docs / engineers want in terms of resources to optimise the research effort to get to a cure as quickly as possible. in financial terms would be simplest.

given the economic burden of hearing damage being hundreds of billions per annum, then it makes sense to fund accelerating this work whatever the cost within reason, ie tens of billions per annum if not hundreds!
Deaf Access Research Group
#7 Posted : Wednesday, January 09, 2013 8:56:18 AM
Rank: Active Member


Joined: 11/12/2012
Posts: 208
hi londoner.

i trust you have taken my advice and signed up with www. sciencedaily.com

A word of caution. The studies quoted have not been academically scrutinized by sciencedaily; that is not their job.

You might also be baffled unless you are an academic, by some of the terminology and unless you live
within distance of a university library, you may have difficulty in accessing the full study/studies in the appropritae academic journals, as these are seldom made on line.

Please do remember that, and i say this politely, you have a lot of catch up work to do.

It is perfectly safe to give sciencedaily your email address. All they will send you is the latest reserach reports for the topics you have asked for/chosen.

kind regards ian
Cornishandy
#8 Posted : Wednesday, January 09, 2013 9:24:32 AM
Rank: Pro Member


Joined: 11/10/2011
Posts: 1,417
I would caution against too much optimism here. It really is a long term gamble. What has been proven so far is that it is possible to breed special cells which can be injected into small rodents and restore their hearing. This is only the beginning.

That is very recent and it's as far as research has taken things so far. What must happen next is to test this further until it gets to the point where it will work on humans. So the most meticulous procedure must be followed and there is no short cut, it will take as long as it takes.
Someone might discover better and quicker ways or maybe it won't work and they have to start again. They will find all this out along the way, they can't realistically tell how long it's all going to take.
londoner50
#9 Posted : Wednesday, January 09, 2013 12:51:44 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
Back in 04/05 Raphael et al partially restored hearing in mice with gene therapy atoh1, around that time Stefan Heller, a stem cell pioneer and leader on hearing resoration was reported as saying clinical trials and maybe treatments were about 10 years away.

Only in 2012 did we find that atoh1 was insufficient on its own to restore hearing in adults and now we are looking for additional gene targets.

Makes me wonder what happened between 04 and 2012 , i am sure a lot happened but it would be interesting to know.

ie rather than just being given a timeframe an explanation of why and what needs to be done.

for example the work by raphael should have in my mind sparked immediate expeditious follow up work by labs. did it or were follow up projects arranged more slowly over the years.

if so where are the roadblocks, is it tools, technology, or funding, process or whatever?

and how can it be fixed so that results from a paper, actually before the paper goes to conference leads to further work to speed things up.

we cant afford the traditional model of research - research then paper at conference two years later, then follow up work formulated 2 years later then research two years later etc takes too long .

need a new model research - significant finding reported during research and made available to ther labs - immediate follow up work at other labs paper along with interim report from secondary labs reported, could save years and years.

ie significant findings in researchers in trays every 6 months or less rather than every 6 years

so we need a fundamentally new model to move things forward. and of course increased funding.


for example the great work by rivolta, how is this being taken up by other labs.

this is just my impression of how things are being carried out, i admit i might be wrong but it would be interesting to know.

I can appreciate how difficult this work is and am hugely appreciative of all the great work these great scientists and labs are doing.
Aaron (Helpline Officer)
#10 Posted : Wednesday, January 09, 2013 1:53:09 PM
Rank: Pro Member


Joined: 10/26/2011
Posts: 823
Hi Cornishandy,

Good idea I will forward this to the editors of the magazine for their view

Londoner50

We push the governement for more funding into research but it's not easy. For the number of people who suffer with it, the funding is pitifully small. Maybe you'd be interested in fundraising for us - every little helps. Please see how you can get involved from baking cakes to sky diving check out our fundraising page.

Best Wishes
Aaron
Helpline Officer
Telephone: 0808 808 0123
Textphone: 0808 808 9000
SMS: 0780 0000360
helpline@hearingloss.org.uk
londoner50
#11 Posted : Wednesday, January 09, 2013 2:13:22 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
Hi Aaron ,
will have a look at fundraising- i am involved in a fundraising project at the moment which I cant talk about yet, but I will be asking AOHL along with other organizations worldwide for support prior to launch q1 2013. as it will need it! It will not be focussed on AOHL but on funding for research so if succesful it will benefit the research. by support i only mean publicity, an email to members would be sufficient, more later i will be writing to aohl formally about this soon.


Hi Ian, thanks am indirectly getting science daily reports every now and then but will give them my email.
I can understand the reports and occasionally read an academic paper - usually just the results/conclusions and abstract!

RobmUNKNOWN1
#12 Posted : Wednesday, January 09, 2013 2:31:34 PM
Rank: Senior Member


Joined: 10/25/2011
Posts: 600
Well I don't think you can expect AOHL to be the academic source of all things Audiological ... ?

A page of links to current and popular news stories / discoveries relevant and understandable to the average (non scientific) reader is one thing,

But a scientific journal is quite another. Scientific journals are mostly paid for and 'unreadable' to the general public - at prices which are causing even ('Rich ?') establishments to complain

I guess from your post that you are (understandably) impatient for hearing 'cures' - me too !

If 'you' know where the research process is going wrong, could be improved or what they researchers 'should' be doing next - I'm sure Government, researcher funders and researchers would be very interested to hear from you.

But suppose a drug / genetic hearing cure was discovered 'today' - it would still need many years of testing , human trials and all the rest before it was licensed for common use. We don't want another Thalidomide event

And the 'cure' discovered is for 'what' ?
The causes of deafness are many (genetic, disease, tramau) so many different 'cures' might be needed.

Science is still researching how the brain actually works - hearing is part (brain) development.
You have to learn to speak and hear a language.
If I 'hear' Chinese for the first time - I'm pretty sure it will be totally meaningless to me - at least until I've completed afew years Chinese courses ....





londoner50
#13 Posted : Wednesday, January 09, 2013 4:34:10 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
on the contrary i think aohl is a great organisation including its support of research and they have links to the very best research.

thanks for the link about journals.

as aaron said or implied the big issue is funding, i am not so presumptuous to think i have answers by any means. i can do what i can to support funding, and i am interested in the science at a certain level, as my background is technology. I am interested in what can be done to expedite the research

i wasnt asking for a scientific journal, just a one or two pager every quarter to explain where we are at.

cheers
Andy Palmer (Helpline Manager)
#14 Posted : Wednesday, January 09, 2013 9:22:32 PM
Rank: Active Member


Joined: 6/17/2011
Posts: 291
RobmUNKNOWN1 wrote:


But suppose a drug / genetic hearing cure was discovered 'today'



Well looks like RobM's sources were correct!

http://bostonglobe.com/n...cw0Z0JrddsPjP/story.html
Andy Palmer
Customer Service and Helplines Manager

andrew.palmer@hearingloss.org.uk
londoner50
#15 Posted : Wednesday, January 09, 2013 11:01:28 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
Timely! This is great news and of huge significance

http://www.eurekalert.or...3-01/meae-shc010813.php

heres the abstract

http://www.cell.com/neur...0896-6273%2812%2900953-1
Cornishandy
#16 Posted : Thursday, January 10, 2013 6:58:19 AM
Rank: Pro Member


Joined: 11/10/2011
Posts: 1,417
Funding has been a big problem until now. Because the principle was unproven financiers were unwilling to risk too much money, in case it all goes phut!

Now that the principle has been shown to be possible, hearing can be restored by custom drugs, there will be more funding available. It's always difficult to get people to invest in wild ideas, the Wright Brothers had the same problem.
Their bank manager said "A flying machine?? Are you crazy?".
They subsequently had what amounted to a whip-round amongst their friends and family and just about scraped up enough to get started on the first tests. Once they got an aircraft to actually fly then there was more money available and within a short while they had viable long distance flight in the bag. We know what happened next.

So I am hoping that we will see a similar advance in a cure for sensorineural deafness from now on. But we still don't know how long that is likely to take. I would have thought that it was worth following up at any rate. Very occasionally I see something about hearing loss in the New Scientist. This is a great read but unfortunately it is expensive.
RobmUNKNOWN1
#17 Posted : Thursday, January 10, 2013 3:27:11 PM
Rank: Senior Member


Joined: 10/25/2011
Posts: 600
Andy Palmer (Helpline Manager) wrote:
[quote=RobmUNKNOWN1]

But suppose a drug / genetic hearing cure was discovered 'today'



Well looks like RobM's sources were correct!

http://bostonglobe.com/n...w0Z0JrddsPjP/story.html[/quote]

Hah - I'll have to try lottery number forecasting next !

I've also asked for a quote from Paul Daniels for temporary (return ticket !) transmutation to a mouse - so that I can avail of new cures - before the queues form or the NHS ceases to be !

londoner50
#18 Posted : Friday, January 11, 2013 2:31:20 PM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
Interesting that the drug used was one developed by Eli Lilly for Alzheimers and had been bookshelved. The pharma company was not involved in the work as far as I can see. Maybe big pharma will get very interested now.

The drug was firsted tested in vitro on mice hair cells.

As Rivolta has figured out I belivee how to make human hair cells in vitro late last year, I guess there is a chance that drugs can be tested on human cells now in vitro by Harvard and Keoi

And the work being carried out at Baylor and Iowa etc etc now under the umbrella of Hearing Restoration Project will be key to developing this further
Andy Palmer (Helpline Manager)
#19 Posted : Friday, January 11, 2013 5:11:20 PM
Rank: Active Member


Joined: 6/17/2011
Posts: 291
Hi all,

Here is a video that came our way today which explains how the new research achieved hair cell regrowth. http://www.cell.com/neur...e/pii/S0896627312009531

Unfortunately there are no subtitles on the video so we did a full transcript of it for you here:
http://www.actiononheari...-the-us-works-2013.aspx

All the best and have a good weekend.


Andy
Andy Palmer
Customer Service and Helplines Manager

andrew.palmer@hearingloss.org.uk
londoner50
#20 Posted : Sunday, January 13, 2013 12:01:37 AM
Rank: Junior Member


Joined: 1/4/2013
Posts: 26
The use of γ-secretase inhibitors was being discussed as far back as 2006 at least - in the context of hair cell regemeration.

I am interested in knowing why it has taken quite a few years to get there, I guess this is a bit involved but in broad brush terms what were the issues, I am sure there were many. Its interesting trying to join the dots, rather than just having the straightforward news.

I am aware that there are issues with γ-secretase inhibitors, but they held (hold) lots of promise?

http://link.springer.com...0109-005-0706-9?LI=true

I suppose I am not really satisfied with journo's presentation of the news, or science dailys for that matter which is usually no better than a press release, not really up for reading the journals and nature i would hope there is a happy medium. eg hearing health foundation tend to pitch things about right.
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