The 2014 ATA Walk to Silence Tinnitus: Donate!

Discussion in 'Awareness & Fundraising' started by daedalus, May 8, 2014.

tinnitus forum
    1. daedalus

      daedalus Member

      Location:
      Brussels
      Tinnitus Since:
      04/2007
      https://walk.ata.org/

      Their annual goal is 60 000 $

      This is not really charity, it is an investment in research and a demonstration of our interest in finding a cure. Important when you lobby politicians that you are able to put your money where you mouth is.

      Thees donations are strictly reserved for tinnitus research grants. Not the administrative costs. You are not forced to become a member i you don't want to. Some of these seed grants have started areas of research.

      It is the only patient organisation to my knowledge which has been able to push the politicians to invest in governemental tinnitus research.
       
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    2. daedalus

      daedalus Member

      Location:
      Brussels
      Tinnitus Since:
      04/2007
      Donated ! :)
       
    3. daedalus

      daedalus Member

      Location:
      Brussels
      Tinnitus Since:
      04/2007
      Bump ! The total amount hasn't changed since yesterday. :(
       
    4. Valentin

      Valentin Member

      Location:
      Thailand
      Tinnitus Since:
      17/08/2013
      the problem with ATA is that each and every year, they always try the same molecules and other things that have been tried in the past 40 years.

      there's no need to try old stuff but there's a need to develop new molecules or new techniques like AM-101, autifony, the vagus nerve etc...

      The cure won"t come from the ATA , that's for sure!

      i'm gonna donate but i would prefer this money to be used not for useless underpaid studies but to lobby their governement and medical companies.
       
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    5. rokry

      rokry Member

      no paypal...??
       
    6. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      The ATA does lobby for tinnitus research and has been successful at getting the US government to target tinnitus in a special funding program that--with support from those who are afflicted--could grow very large.

      Studies that are directly funded are funded according to a competitive proposal process that involves a large and always changing Science Advisory Committee that includes scientists from around the world.
       
    7. Hudson
      Cowboy

      Hudson Member Benefactor

      Tinnitus Since:
      2003
      I'll donate this evening. I feel that the ATA definitely has done some good in the US by lobbying to get tinnitus recognized as a disability by the VA.
       
    8. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      I think the walk is a good thing to support and hopefully will bring more awareness than Tinnitus week. Too bad last week was the ATA National Tinnitus Awareness week and barely a blip or mention in the media.....Google news has a whopping 7 mentions of it in search results
       
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    9. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      Based on my experience, I'd say that broad-based support of tinnitus research from the public is very unlikely, regardless of the type or intensity of efforts to increase awareness. I think we have to leverage the degree that those who suffer from the condition (and their families and friends) support research.

      I think the ATA is in a good position now to both fund new kinds of research that weren't possible ten years ago and also exert pressure on funding agencies to direct more money to competitive tinnitus research. The recent success with the US Department of Defense is a good example of the latter.

      The Walk, by the way, takes place June 8th and not May 8th as in the current banner you see here. Apparently I got hold of an old version of the graphic that had this error in it. Should be corrected shortly.

      There is no PayPal option this year, but the Walk web site is a secure one for credit card use, and snail-mailed checks also work just fine.
       
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    10. daedalus

      daedalus Member

      Location:
      Brussels
      Tinnitus Since:
      04/2007
      Isn't it starting a bit slowly ? For a long time !? Last year they got more than 40k. Thanks in part to a generous 10K donation from Steve Martin.
       
    11. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      Donations tend to come in in the final week.
       
    12. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      I only did a quick search but is there anything Tinnitus or ATA related that goes on near NYC. @jchinnis
       
    13. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      Sorry. I really have no information of that type.
       
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    14. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      I hope people will sign up to donate this weekend, as the deadline is upon us. I know that there are excellent and novel research proposals that are not being funded due to lack of money for them.
       
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    15. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Personally, I am not a huge supporter of the ATA or any other tinnitus association, but the following (slightly old) video clip from 2012 is quite well done, I think.



      One thing I don't get is the following: at the beginning of the video, some statistics are mentioned - I believe the presentor says there are 50 million people living with tinnitus in the United States; then the video presentor states that there are 60 million people living with chronic tinnitus. How can there be more people living with chronic tinnitus than with tinnitus? Chronic tinnitus sufferers would be a sub-set of the total tinnitus population, and must therefore be less than 50 million. According to my logic, at least...
       
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    16. Mr. Cartman
      Artistic

      Mr. Cartman Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      12/2013
      To my logic as well.

      When I went to secondary school, we had this club going on. I remember it so vividly, as I didnt enjoy it too much,
      but our school told us so many horror stories about drinking or spending too much time with no socialisation and told us that everyone should go to this club. Even our parents would push us out.
      Every time they were playing so damn loud music that everyones ear would ring afterwards.

      Now I see that there are 60 million people in the US alone that suffers from tinnitus, and I would guess a lot of them are noise induced.

      This really scares me, that schools, or at least mine seems to have no idea what consequences noise might have.
       
    17. Marlene
      English

      Marlene Member Benefactor

      Location:
      Poole Dorset England
      Tinnitus Since:
      July 1996
      Cause of Tinnitus:
      Bacterial virus
      With today's youngster,they only play loud music,on there I pods,when I pass them with these phones in there ears I wish they could hear my ears hissing away,they would in a heartbeat stop wearing these ear pieces to listen to loud music.How many parents are aware,their kids are being harmed by the loud music they listen to..to late when they get this condition.Education into tinnitus needs to be done,never to young to learn I say.A lifetime of this noise can be prevented to the young regarding loud music,Today they seem to be developing this condition younger and younger. I call that truly sad

      I'm a member of the British Tinnitus Association,but I will ask on this forum. Do all the T A s join forces at sometime on there clinical studies ?
       
    18. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      The "T As" are each very different. The ATA--which is the only one I know in detail--solicits competitive proposals and also lobbies for greater government funding. It also works to establish research centers (government). It exists to do whatever is necessary to cure tinnitus.
       
    19. Valentin

      Valentin Member

      Location:
      Thailand
      Tinnitus Since:
      17/08/2013
      she said 16 :)
       
    20. Marlene
      English

      Marlene Member Benefactor

      Location:
      Poole Dorset England
      Tinnitus Since:
      July 1996
      Cause of Tinnitus:
      Bacterial virus
      Hi J Thanks for reply to the TA s question,sad when they all have one goal in mind,our governments the same,no cash for this either,can always find money to waste on trivial things.much to all in UK s annoyance,maybe if Cameron and other of our MP s had this condition funds would be flooding in ,same for all illnesses .same the world over hey. I do get BTA mag every quarter it's an interesting read on what they're doing.Good all round mag. what's the US one like ?thanks again .Marlene
       
    21. daedalus

      daedalus Member

      Location:
      Brussels
      Tinnitus Since:
      04/2007
      Here in Belgium our prime minister has tinnitus and financing tinnitus research is not on the agenda.
       
    22. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Well perhaps I don't just have tinnitus - but also hearing loss...! :)

      Seriously though - before posting yesterday - I did listen to the recording some 4-5 times, and I even now after you point out that the presentor says "16", I still hear it as 60...

      Anyone else that hears it as "16" or as "60" million...?
       
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    23. Hattukoira
      Tired

      Hattukoira Member

      Location:
      Finland
      Tinnitus Since:
      07/2010
      "sixteen million"
       
    24. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Thanks - although that is not the answer I had been hoping for... :)
       
    25. jazz
      No Mood

      jazz Member Benefactor

      Location:
      US
      Tinnitus Since:
      8/2012
      Cause of Tinnitus:
      eardrum rupture from virus; barotrauma from ETD
      @jchinnis Could you please elaborate? I believe every member here is interested in ATA activities. We do know about some--especially lobbying for research and supporting small grants for researchers.

      And I do believe increasing visibility would only help the ATA. Combining visibility with a positive, supportive message about tinnitus research and the efforts towards a cure is vital to garner more funds for research. I'd like to see ATA banners on many sites, especially among populations most likely to experience tinnitus.

      Just an idea.
       
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    26. Valentin

      Valentin Member

      Location:
      Thailand
      Tinnitus Since:
      17/08/2013

      don't worry about speech recognition, more information/studies nowadays tend to show it's more of an auditory cortex problem than inner ear, that's what autifony and their aut0xxxx63 is looking to fix/help.
       
    27. jchinnis

      jchinnis Member

      Location:
      USA: Northern Virginia and Seattle area
      Tinnitus Since:
      12/1989
      @jazz
      Funding a lot of research, lobbying for government funding of tinnitus research, working to get tinnitus included in the direct activities of government research centers all cost money. The grants cost money, and having people work on these activities in an effective way also costs money.

      Years ago I analyzed some of the efforts to bring in more ATA members and more funds. One of the things I was interested in was whether Public Service Announcements and advertising and other outreach efforts were effective and how effective they were in reaching and motivating people withOUT tinnitus.

      I came away from that (informal but statistically sound) effort with the feeling that tinnitus was not cancer or heart disease or cystic fibrosis. People withOUT those conditions often give generously to fund research. Yes, they know they might develop them or have a child with them and so on. But tinnitus is--I still think--different in that regard. No one makes fun of cancer; but I have seen many people laugh at the idea of looking for a cure for tinnitus, even severe tinnitus.

      I really think that advocacy groups that try to increase research into tinnitus have to rely on funds from those with tinnitus. That makes the potential pool of donors comparatively small. And unless those people who suffer from tinnitus are willing to support such groups themselves, it is going to be a slow, slow search for cures.

      In terms of the ATA, it has been fairly successful in leveraging the little money that is donated. It has gotten the US Department of Defense funding tinnitus research on a regular basis. It is working (with some success) to get government centers (such as the DoD Hearing Center of Excellence-- see http://rwtf.defense.gov/Portals/22/Documents/Meetings/m18/041hce.pdf ) to include tinnitus as a major part of its efforts.

      Those sorts of things get around the problem of having to get all the funds from tinnitus sufferers. But getting even those kinds of things to happen takes lots of work and money, and the only source for that work and money is ... us.
       
      • Agree Agree x 1
    28. jazz
      No Mood

      jazz Member Benefactor

      Location:
      US
      Tinnitus Since:
      8/2012
      Cause of Tinnitus:
      eardrum rupture from virus; barotrauma from ETD
      @jchinnis Thank you for the thoughtful reply and information regarding ATA activities, including the link about the DoD Hearing Center of Excellence. This information is greatly appreciated. And the ATA's lobbying activities are quite impressive. We must hope that our fractious Congress continues to fund tinnitus research.

      I'm unsure if anyone has an accurate estimate of how many people suffer from chronic tinnitus. But the numbers for acute tinnitus must be very high. If the acute sufferers could be consistently engaged, fundraising opportunities would increase manyfold.

      Social networking offers new possibilities to connect with all tinnitus sufferers, and I know the ATA does have a Facebook presence. This is a beginning. Fundraising for younger sufferers will necessitate different strategies than for older ones. That's why tinnitus websites, such as TT, are important in increasing awareness.

      And I do understand that tinnitus has a limited public appeal, unlike other chronic diseases. But people with tinnitus--whether acute or chronic--do have a great interest in tinnitus research as this site (TT) evidences. Turning this interest into hope are key to furthering fundraising efforts.

      Using social media is one tactic to increase awareness about research; and such use would not increase costs. Perhaps, support groups could also be engaged to recruit members and increase public awareness. Coordinated throughout the country, local newspaper coverage might be additionally useful in increasing awareness, spreading news about research discoveries, and recruiting members. Such publicity is easily obtained in many communities for no charge. Unlike younger tinnitus sufferers, who do use the Internet and are active on social networking sites, older people with this disease are more likely to obtain information from a personal or written source. And, unfortunately, I do not believe the medical community is a good source for referrals. Nor are most audiologists.

      Of course, all tinnitus sufferers should contribute to tinnitus research. Every little bit helps. Most importantly, the ATA's lobbying efforts continue to bring good things to tinnitus research.

      Supporting the ATA and all tinnitus advocacy groups are critical to continue research into a cure. Because tinnitus is a brain disease, I'm not confident that efforts to restore hearing or otherwise repair the cochlea and related structures will abolish the tinnitus precept for chronic sufferers. That's why supporting tinnitus specific research is so important.

      And I do hope the ATA's Walk to Silence Tinnitus was a success!
       
    29. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      Yup thought I heard 60 as well.
       
    30. coolbeer
      Cool

      coolbeer Member

      Tinnitus Since:
      04/2014
      @attheedgeofscience I too heard it as 60 million , its her accent actually , not mistake of our hearing
       

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