The Viral Ice Bucket Challenge Has Raised $12 Million For ALS

Discussion in 'Awareness & Fundraising' started by Grace, Aug 18, 2014.

tinnitus forum
    1. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Hey guys so im sure some of you know its goin around everywhere.. Theres this big charity to help out lou gehrigs disease which is currently uncurable. Its a pretty nasty and eventually deadly disease. People are dumping ice ontop of them and getting it on video.. Then you have the option to donate money afterwards. They currently raised 15 some milliom dollars. Me and a few friends got nominated to do it also. ---- now i wonder if the ATA or BTA could come up with something like this to raise money for tinnitus awareness. You think people would take it just as seriously or no cause its not a "deteriating deadly disease"? I just think theres alot out there that can be done to raise more research money.. But it has to go public to everyone and get the word spread through facebook/twitter/instagram. Even celebrities are getting in on this challenge and how many celebrities have T? Alot so you would think if it went public bigtime they could raise a fairly decent amount of money.. Question comes down to how the public will view our illness and if they think its not a big deal. ---but into the ice bucket i go for now!!! :)


      http://time.com/3136458/viral-als-ice-bucket-challenge-funds-raised-12-million/
       
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    2. washashore
      Fine

      washashore Member Benefactor

      Location:
      Massachusetts
      Tinnitus Since:
      04/2014
      @Grace it's funny that this whole ice bucket challenge thing has taken off. Just over a month ago, I read an article about a former college baseball star who was battling ALS. It really made me think about how important it is to have a sense of perspective with tinnitus; it could be a lot worse. I even posted about it here - https://www.tinnitustalk.com/threads/perspective.5352/ Little did I know that, a few weeks later, that same guy would start the ice bucket challenge.

      I haven't been around the "T scene" long enough to know the status of fundraising efforts, but with all of our military service members who are coming home with T, it seems like there is some real potential there. I bet a bunch of different charities are going to try a recreate the ice bucket challenge in some from or another, but it's tough to get some to go viral like that.

      We need something unique to catch on... Maybe we can create a facebook post that makes a high pitched squeal until you donate 100 bucks! Or, more realistically, we could organize a team to run a marathon and raise awareness that way - "running to stop the ringing!"

      I suppose we could all start by becoming benefactors of Tinnitus Talk! ;)
       
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    3. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Yeah see i know the ata/bta does yearly marathons or swim marathons to raise money but comeon, in reality that does not compare to this ice bucket challenge. Everyone, " mostly" everyone has a facebook, twitter, or instagram and its so convienant today to socialize through social media--example tinnitus talk which is brilliant and wonderful and a godsend! <3 ..awareness gets spread quickly through the online media.. And honestly that ice bucket thing is brilliant cause one its a blast! (Me and few friends are makin a little music video too it lol) And two.. You dont really gotta make a trip out of your house too do it... And when you nominate someone on facebook they get 24 hours to do the challenge or you can donate up too 100. People catch on too it.. They see there friends doin it and go wow i wanna do that! I saw 3 people at the beach yesterday who did it. I was talkin to friends and we were sayin how crazy this thing got peoples attention to awareness. Every illness/disease should set something up like this and let it flow through the crowd! We could get millions donated! -- guess the ata could start it up somehow..
       
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    4. ashley
      Busy

      ashley Member

      Tinnitus Since:
      4/28/2014
      I need to get thinking! This would be amazing.
       
    5. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      I have been thinking about the same thing! How can we harness this? Something with noise. Like the " this is my tinnitus" videos?
       
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    6. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Thanks for sharing; I do tend to like stories that "go viral" for one reason or another. Problem is that tinnitus is not a very "interesting" disease (from the public point-of-view): as a starting-point, it has no visual impact. And in fact, tinnitus is not even a "disease" - it is classified as a symptom (as we all know).

      I don't believe raising money will make a difference at this stage. Otology therapies have moved from being a pure research topic to being an applied research topic. It means that it has moved from academic- to business territory. The last time I had a look at the combined funding of the 10-11 companies currently pursuing therapies of the inner ear, I would easily put the combined raised capital at 500 million dollars or more. They therefore have the funding they need; if they didn't - they would get it...

      The best thing the ATA/BTA could have done years ago with its limited budget and when we didn't have the current therapies being developed, would have been to:

      1) Hire a hardcore lobbyist who could convince the US Congress in seeing the logic of spending an additional 1 billion dollars now - in return for not having to spend a billion or more dollars each and every year in the future (also known as return-on-investment).
      2) Find a superstar celebrity like U2's Bono who would be willing to use his image to raise awareness (and $$$); if Bono would just do one "tweet" (or whatever it is called :)) before closing night of the ATA fundraiser - imagine the effect it could have! Honestly, how much work would it take for him to write a max 140(?) character message?

      But those opportunities have come and gone. And hence the novel will now write its own ending.

      [I am not sure this topic belongs in "support".]
       
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    7. Sound Wave
      Curious

      Sound Wave Member Benefactor Team Tech

      Location:
      Finland
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Probably headphones
    8. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      yeah thats where my doubts come in.. People will think oh im not donating for a non deadly disease like tinnitus. But then arthritus can be put into the same category-- non curable but liveable but a pain in the assss! People cant forget theres "symtoms" or diseases out there that are not cancer that ruin lives and inneed of a cure!
       
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    9. iAzra
      Dreaming

      iAzra Member

      Location:
      Croatia
      Tinnitus Since:
      11/2011
      Cause of Tinnitus:
      Acoustic trauma, Stress, Nose hit
      I don't care for money, I'd like to rise awarness so that people doesn't look at me like I'm making up something :) Goes for H too :)
       
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    10. washashore
      Fine

      washashore Member Benefactor

      Location:
      Massachusetts
      Tinnitus Since:
      04/2014
      While browsing around for fundraising info, I came across this story about the boston marathon bombing and hearing loss/tinnitus. http://hearinghealthfoundation.org/blog?blogid=69

      I was at the event that day but thankfully not close enough to the explosions to be impacted. Still, I have assumed that many many people got T that day.
       
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    11. jazz
      No Mood

      jazz Member Benefactor

      Location:
      US
      Tinnitus Since:
      8/2012
      Cause of Tinnitus:
      eardrum rupture from virus; barotrauma from ETD
      You'd need to find a celebrity willing to do this and not want anything in return. It's not a quid pro quo situation. That said, Bono is very charitable as are some other celebs with tinnitus. Perhaps, Cold Play would also be willing. In 2002, Malcolm Gladwell wrote the seminal book, Tipping Point, in which he describes how and why some things become viral:

      The tipping point is that magic moment when an idea, trend, or social behavior crosses a threshold, tips, and spreads like wildfire. Just as a single sick person can start an epidemic of the flu, so too can a small but precisely targeted push cause a fashion trend, the popularity of a new product, or a drop in the crime rate.
      For the tipping point to occur, you need the right people and at the right time with the right message. With today's social media tools--especially YouTube and Twitter--it's easier than ever to achieve a tipping point. Of course, national media involvement must occur early on and, please note, the US media is giving much coverage to this ALS fundraiser. That said, I believe tinnitus could achieve fame by a tipping point mechanism.

      Here are some more key points on how this works. Please see the wiki article for details:

      "The Law of the Few", or, as Malcolm Gladwell states, "The success of any kind of social epidemic is heavily dependent on the involvement of people with a particular and rare set of social gifts".[3] According to Malcolm Gladwell, economists call this the "80/20 Principle, which is the idea that in any situation roughly 80 percent of the 'work' will be done by 20 percent of the participants" (see Pareto Principle).[4]

      ...

      The Stickiness Factor
      The specific content of a message that renders its impact memorable. Popular children's television programs such as Sesame Street and Blue's Clues pioneered the properties of the stickiness factor, thus enhancing the effective retention of the educational content in tandem with its entertainment value.

      The Power of Context
      Human behavior is sensitive to and strongly influenced by its environment. As Malcolm Gladwell says, "Epidemics are sensitive to the conditions and circumstances of the times and places in which they occur".[11] For example, "zero tolerance" efforts to combat minor crimes such as fare-beating and vandalism on the New York subway led to a decline in more violent crimes city-wide. Gladwell describes the bystander effect, and explains how Dunbar's number plays into the tipping point, using Rebecca Wells' novel Divine Secrets of the Ya-Ya Sisterhood, evangelist John Wesley, and the high-tech firm W. L. Gore and Associates. Malcolm Gladwell also discusses what he dubs the rule of 150, which states that the maximum number of individuals in a society or group that someone can have real social relationships with is 150.[12]
      Now all we need to do is create an action plan and execute it! The only failure is in not trying!:)


      References:



       
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    12. jeffie7
      Wishful

      jeffie7 Member

      Location:
      Maryland USA
      Tinnitus Since:
      06/2003
      Sadly most people doing the ice bucket challenge have no idea what ALS is.

      I've explained it to a handful of people already... But they are doing the challenge because it's the current thing to do.

      To have back to back viral fundraising trends, sadly I just don't see it. Now if someone could plan out a new thing to do and try to time it to hit in a year of two, there would be a better chance of it taking off.

      If someone donates $5 at their local grocery store, chances are if someone hits them up later that day at a different store, they will be told sorry I already donated money today...

      On another note personally seeing someone go from active and healthy and watching him go down hill over the next year and dying... ALS is nasty. I'd gladly live my life with ringing in my ears to not have to watch his 2 teenage sons go through what they went through as they pretty much took care of him as he couldn't move in the final stages. Still bothers me thinking about it.
       
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    13. russiancarl

      russiancarl Member

      I hadn't heard of this before. There really is that much money being pumped into otological treatments? Is this in general or specifically tinnitus?

      As I was understanding it this year was the first that funding went over $10mm in the USA. I guess that's federal funding but it seems to me there is still a lot of resources to be poured into this ailment. 10-11 companies just doesn't seem like enough to me to see any real therapies anytime soon. Think of how many drugs come out that don't pass muster... we need quantity!

      As for the ALS stuff -- yes that does give you a lot of perspective. It's a horrible disease and even though I find the ice bucket challenge silly I am glad it is raising money and awareness.

      I was recently looking to donate some money to tinnitus research and looked at the ATA site but I don't know... they just seem so ineffective that I feel my money would be better served elsewhere. Though I have no clue where that would be...
       
    14. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      I think they've raised over 20 million at this point. I think @Grace you hit the nail on the head with this, T is not a deteriorating deadly disease" But i think as far as raising money T has an advantage to ALS. AlS affects something like 2 in 100,000 people. Its estimated that 33,000 people have it in the USA. I did not do the math but thats not a lot of people worldwide. Millions of people have T , and those millions of people have friends and family. In sheer numbers we should be able to raise a lot of money. On this board alone we have 4,000 members if we each and one friend donated ten dollars that $80,000. The trick is to find a way to reach those people with some clever message and make sure that the money goes toward finding a real cure imo.
       
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    15. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Yeah, totally. Someone else said it on here and this is so true.. My dad brought it up also about ALS.. That most of those people doing the ice bucket challenge dont know/care what ALS is and that they were just dumping ice on there heads cause its what there friends/celebrities and everyone is doing for fun. I know someone that got nominated and said " im not doin that, i dont have ALS so i dont care". Rudest thing i ever heard but thats the reality of some people, if it doesnt effect them they dont care and will put there money elsewhere on pointless things. :-(
       
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    16. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Another thing that i was just randomly thinking about..... The lottery totals sometimes up to 500 million dollars such as the powerball. If they made like a " health lottery" not to win money but to win the cure for cancer or any illness.. That would be SOOOOO much money that would get donated and too amazing causes. Every state should do it.. And if they did i bet cures/treatments would be flying all around us. Sucks people dont have hearts.
       
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    17. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      I didnt see this in the thread so I apologize if it has already been posted. In my opinion this is the most powerful ice bucket challenge video: http://www.youcaring.com/medical-fundraiser/for-anthony-with-love/133001

      @Grace In only about 5-10% of cases ALS is genetic, in around 90% of cases scientists dont know why some people get it or not (it has to do with a gene mutation but they dont know why some people have it). So if the people who don't care now might care once they or their loved ones get it. I dont mean to say that I want them to get it, but it is definitely not correct to think that it has nothing to do with us.
       
    18. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Yeah i dont want anyone to get it, but if your human anything can happen and your bound to get something if its T, cancer, arthritus, diabetes, etc and anyone that thinks that it wont happen to them is just ridiculous because the body isnt suppose to be superhuman -- things can and will go wrong. I just think people need to understand that more and put there money where it matters cause research is the only way to get us to where it could save lives in the future-- including T ( it wont kill us but its a mental torture to alot).--- and i got like 2 minutes into that video and couldnt take watching that...
       
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    19. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      haha sorry about the video but T seems like a piece of cake compared to that....
       
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    20. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      I know.. Thats just really hard to watch. I cant stand too see people like that its so sad. And yeah T is nothing compared to that but in ways they both have there downsides.. T doesnt physically cripple us but mentally it can get to the point. Either way ill take T anyday over ALS. I could see myself if my T ever got to the point where it gets the best of me saying that i would choose ALS but in reality thats just me speaking out my ass and not in truth. But ugh i hate seeing people suffer with any condition, just wish i could help but then thats why theres charaties and things more have to donate too so eventually there can be a cure for all illnesses. Just so much things that could be done with the right money but people choose to put it elsewhere, and doesnt seem like thats gonna change anytime soon. God bless those people in that video though, hugs and prayers to them!
       
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    21. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      Me and a few mates were only discussing this today,that we should start something viral for T and H next month,we have piles of ideas but they have to be simple that anyone can do with an hilarious reaction after,hopeing to get something together soon and get the awareness and attention this condition deserves.
       
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    22. daedalus

      daedalus Member

      Location:
      Brussels
      Tinnitus Since:
      04/2007
      You could try the Tinnitus Research Initiative: http://www.tinnitusresearch.org/
       
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    23. Jay M
      Thinking

      Jay M Member

      Location:
      South Carolina, USA
      Tinnitus Since:
      4/4/14
      T is no where near as devastating as ALS but is life changing and more awareness needs to be made bc it can happen to everyone.
       
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    24. Mark McDill
      Curious

      Mark McDill Member Benefactor

      Location:
      Papillion, NE
      Tinnitus Since:
      03/2013
      Cause of Tinnitus:
      Likely stress, anxiety, an antibiotic and nsaids
      Instead of an ice-bucket challenge maybe people could sit in silence in a sound proof room for 30 minutes and experience T; or just subject themselves to an annoying sound for 5 minutes. That should get their attention...
       
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    25. jazz
      No Mood

      jazz Member Benefactor

      Location:
      US
      Tinnitus Since:
      8/2012
      Cause of Tinnitus:
      eardrum rupture from virus; barotrauma from ETD
      Interesting idea! :D
       
    26. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      @Grace
      @jazz
      @bill 112
      @Mark McDill

      There should be a set of headphones with tinnitus sound, the person gets to "wear" it for a day or a week (or whatever) if they take it off any earlier they need to donate the money!
      Not sure how easy or hard this would be to implement but it's just an idea:)
      So this would give them first hand experience!
       
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    27. aleks90

      aleks90 Member

      Tinnitus Since:
      2008
      Nice idea! But I think it wouldn't work, even though that would be the best!

      It's too much of a commitment to expect people to wear something annoying for a decent amount of time. It's not fun, it's just annoying and depressing.

      I totally agree with you that it should be spread awareness about how serious and deadly it can become, but then it's better to show horror stories rather than having it in the challenge itself.

      The Ice bucket challenge worked because it was simple, funny and silly. It spread even though many didn't even know what ALS stood for. In a way that is a bad thing, but because of how widely known it became it just didn't matter. I didn't know either when I got challenged, but I got curious, and therefore I later donated.
       
    28. walkthroughwalls

      walkthroughwalls Member

      Location:
      The Netherlands
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      possibly noise
      First off, I've read quite a number of contributions by you and they're always very informative and well-written. Thank you :) I'm really happy to see someone with this level of focus, care and integrity.

      Would you care to explain why Otology Therapies have gone from academic to business territory? From what I've understood, it is still unknown what causes tinnitus. In a way, it means that we're still unclear on the inner workings of the ear, the nerves and -especially- the brain. Which would make for typical academic research questions, wouldn't it?

      Also, how come raising more money wouldn't make a difference at this stage? More money equals more scientists at work, more research, faster research, more tests, more knowledge, more chance at finding a cure... isn't it?
      Is research 'done', now that we have a couple of therapies? Why are the 'lobbyist' and 'Bono' options not available anymore?

      Or am I completely missing the point here? :unsure:
       
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    29. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Once companies have moved past the pre-clinical trial phase, it means that they have a finished product "in their hands" which has been researched and developed. It does not mean that it works. But, it means that they have good assumption that it works. If they didn't have a good assumption, they wouldn't be testing it on humans.

      There are now 3 pharmas pursuing research into otology therapies and all of them have tinnitus products in the post pre-clinical phase. One of them - Otonomy Inc. - purchased the R&D of a clinical phase-I trial from the company NeuroSystec. They wouldn't have purchased all the intangible assets if they didn't have faith in the compound, Gacyclidine.

      There are currently at least four drugs being seriously looked into as a treatment against tinnitus:

      AM101 (phase III)
      AM102 (pre-clinical but lead compound selected)
      AUT00063 (phase II)
      OTO-311 (phase I/II)

      You can find the complete listing of all pharmas currently pursuing research of therapies of the inner ear (contains both financial and clinical trial data that I have tracked down relentlessly).

      To your average ENT "down the block" - yes.

      Perhaps scientists do not have a precise understanding of tinnitus at the cellular level, but they do have an overall understanding of tinnitus which they have been able to confirm via experiments done on animals. There are several ways to approach developments in medicine: theoretically and by trial-and-error. And the "trial-and-error" method does not necessarily require you to know what you are doing. Although it does help...!

      When pharmaceutical companies have their products in the post pre-clinical trial phase, it means that the R&D aspect of the product has been completed. The cost burden from then on is the execution of the clinical trial itself - which will already have been budgeted.

      If all of the above products fail then - yes - more money is needed. But my guess is that we will see tangible results from at least one of the products listed above or from all of the products, but in different ways (eg. some may end up being marketed as a treatment against early stage tinnitus, whereas others may prove effective for chronic tinnitus; each will have a different safety profile and so one may be preferred over others, and so on). But even if all of the above drugs should fail, I believe that the current pharmas have made enough progress in order to know where to continue their current research. And with +10 companies looking into therapies of the inner ear, there is a race between them to be the first to get their product to the market. There is big money to be made from this virgin market segment. And they will get therefore get the funding they need.

      Don't tell me capitalism doesn't work.
       

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    30. Fenas

      Fenas Member

      Tinnitus Since:
      11/2014
      I think the faster we start this the better. But what is the organisation people should donate money to?
       

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