According to ALS Association, the Ice Bucket Challenge has funded an important scientific gene discovery in the progressive neurodegenerative disease ALS.
The Ice Bucket Challenge went viral in 2014 and raised $115 million from people, including prominent celebrities, pouring cold water over themselves and posting the video on social media.
The project was criticized as a stunt, but has funded six research projects.
Photo Getty Images
Scientists have identified a new gene contributing to the disease, NEK1.
Research by Project MinE, published in Nature Genetics, is the largest-ever study of inherited ALS, also known as motor neurone disease (MND).
More than 80 researchers in 11 countries searched for ALS risk genes in families affected by the disease.
Lucie Bruijn of the ALS Association says: “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available.”
The identification of gene NEK1 means scientists can now develop a gene therapy treating it.
Although only 10% of ALS patients have the inherited form, researchers believe that genetics contribute to a much larger percentage of cases.
Social media was awash with videos of people pouring cold water over their heads to raise money for ALS in the summer of 2014.
More than 17 million people uploaded videos to Facebook, which were then watched by 440 million people worldwide.
According to a Johns Hopkins study, money raised from the Ice Bucket Challenge has significantly boosted research into ALS.
Ice Bucket Challenge campaign went viral during 2014.
They say it has helped them to understand more about a dysfunctional protein – TDP-43 – a mystery scientists have been studying for decades.
ALS is a rare condition affecting the nervous system.
Social media was awash with videos of celebrities and common people pouring cold water over their heads to raise money for ALS in 2014.
More than 17 million people uploaded videos to Facebook, including many celebrities who rose to the challenge, which were then watched by 440 million people worldwide.
Photo Getty Images
The study, published by Johns Hopkins researchers in Science journal last week, credits the Ice Bucket Challenge with helping them to unravel the mystery behind a protein called TDP-43, which in more than 90% of ALS cases is dysfunctional.
“For the past decade we’ve been trying to figure out exactly what it is doing, and now I think we have finally figured it out,” Jonathan Ling, of Johns Hopkins Medicine, said in a YouTube video explaining the university’s latest breakthrough.
“The best part is it can be fixed, so with any luck this could lead to the possibility of a cure or at least a slowing down of this terrible disease,” he continues.
Prof. Philip Wong added: “The money came at a critical time when we needed it.”
However, they warned that the work was ongoing and many current ALS sufferers would not necessarily see the benefits of the research.
In the US, the ALS Association – which represents people with amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease) and all motor neurone disorders – received $115 million in donations during the months of August and September, when the challenge was at its peak.
The ALS Association says the money helped triple the amount it spends on research every year.
More than 12,000 people in the US have a definite diagnosis of ALS, for a prevalence of 3.9 cases per 100,000 persons in the US general population, according to a report on data from the National ALS Registry.
The ALS Ice Bucket Challenge has gone viral to an extent rarely achieved by health-care topics.
The challenge format is simple – somebody has water, often full of ice cubes, dumped over their head. They then nominate people they know to undertake the same challenge.
There have been in excess of 2.4 million ice bucket-related videos posted on Facebook, and 28 million people have uploaded, commented on or liked ice bucket-related posts.
On image sharing website Instagram there have been 3.7 million videos uploaded with the hashtags #ALSicebucketchallenge and #icebucketchallenge. Justin Bieber’s has been the most popular – with about one million “Likes”.
The stunt is typically intended to raise money and awareness for the Amyotrophic Lateral Sclerosis (ALS) Association.
Justin Bieber’s Ice Bucket Challenge has been the most popular on Facebook with about one million Likes (photo Justin Bieber)
From July 29 to August 28 this year ALS received $98.2 million – compared with $2.7 million donated during the same period last year.
Google searches for both ALS and Lou Gehrig’s Disease, an alternative name in the US, rose sharply from August 13 to a peak on August 21. Since then they have been declining.
From August 1 to August 27 this year, the ALS Wikipedia page had 2,717,754 views. This compared with the 1,662,842 people who had visited the page during the whole of the preceding 12 months, according to data company Dataviz.
Average daily visits to the ALS association website were about 17,500 before the ice bucket challenge, compared with the peak of 4.5 million visits on 20 August (of which 83% were new to the site). During the past month there have been about 30 million visitors in total.
As of August 29 the Ice Bucket Challenge had 4,483,726 Twitter mentions. ALS Twitter followers had increased from 8,975 in early July to 21,100.
The eldest son of Duck Dynasty stars Willie and Korie Robertson, John Luke, accepted the ALS Ice Bucket Challenge from his father.
Hundreds of celebrities and sports stars across the US are getting soaked in the name of a good cause.
The Ice Bucket Challenge is aimed at helping strike out ALS (Amyotrophic lateral sclerosis), commonly known as Lou Gehrig’s disease.
John Luke Robertson accepted the ALS Ice Bucket Challenge from his father Willie (photo Twitter)
People who participate are getting doused with ice water and then challenge other to do the same to raise awareness for the disease.
Willie Robertson and his trademark beard are the latest to take the challenge. Friends dumped water on him from the roof of his West Monroe, Louisiana, business, Duck Commander. He challenged his son, John Luke, professional baseball player Adam LaRoche and NFL player Matt Light to go under the bucket.
John Luke Robertson accepted the challenge and nominated his friends.
Duck Dynasty’s Jase Robertson accepted the Ice Bucket Challenge to raise awareness of ALS (Amyotrophic Lateral Sclerosis) after being nominated by Tim Tebow and Joba Chamberlain.
Detroit Tigers pitcher Joba Chamberlain took the ALS Ice Bucket Challenge targeting Jase Robertson, Braves outfielder B.J. Upton, and his own manager, Brad Ausmus.
Jase Robertson accepted the Ice Bucket Challenge after being nominated by Tim Tebow and Joba Chamberlain (photo Facebook)
Missy Robertson’s husband has nominated his fellow reality stars John Godwin and Justin Martin.
Jase Robertson posted his Ice Bucket Challenge video on Facebook, saying: “Thanks to Tim Tebow and Joba Chamberlain for the challenge to raise awareness of ALS. Godwin and Martin are on the clock!”
Photographer Anthony Carbajal, who was recently diagnosed with ALS (Amyotrophic Lateral Sclerosis), has posted a hilarious video of himself as part of his very own Ice Bucket Challenge.
However, the rest of the video, where Anthony Carbajal explains his story and addresses the “haters” of the challenge sparked his call to arms to go viral.
“ALS is so, so f***ing scary,” Anthony Carbajal says.
“That’s probably why nobody talks about it. No one wants to see a depressing person that’s dying.”
ALS runs in the wedding photographer’s family – his mother has the disease and his grandmother passed away from it.
Anthony Carbajal, who was diagnosed with ALS earlier this year, had to stop working and is already experiencing lack of muscle control
The disease, also known as Lou Gehrig’s disease, slowly breaks down the motor neurons that send signals to the spine and brain. When all the motor neurons are broken down, the ultimate result is death.
Anthony Carbajal was diagnosed with ALS on January 27, 2014.
“Eventually I won’t be able to walk, talk or breathe on my own” he says.
The video shows Anthony Carbajal caring for his bed-ridden mother.
According to his YouCaring crowd-funding page, Anthony Carbajal also had to stop working and is already experiencing lack of muscle control. His message has spread, because so far, the page has raised over $100,000 – a little over half of his goal.
Despite arguments against the challenge, Anthony Carbajal is grateful for the support: “You have no idea how every single challenge lifts my fears, lifts every single ALS patients’ fears.”
Former President George W. Bush accepted his daughter Jenna Bush Hager’s ice bucket challenge on August 20.
In a hilarious twist, former First Lady Laura Bush surprised him with the face full of cold water after the former president offered just to write a check.
Jenna Bush Hager nominated her dad for the viral challenge, which has helped raise over $22 million for ALS Association, when NBC News’ Craig Melvin doused her last week.
George W. Bush wrote on Facebook: “Thanks to Jenna Bush Hager, Rory McIlroy, Woody Johnson, and Coach Jim Harbaugh for the #IceBucketChallenge – and to Laura W. Bush for the check. Next up: President Bill Clinton. Help #StrikeOutALS at www.alsa.org.“
The former president starts his video by trying to forgo the ice altogether.
George W. Bush accepted his daughter Jenna Bush Hager’s ice bucket challenge
“I do not think it’s presidential for me to be splashed with ice water,” George W. Bush said.
“So, I’m simply going to write you a check.”
Then Laura Bush sneaks up behind her husband and splashes him with the required bucket of ice water.
“Now it’s my privilege to challenge my friend Bill Clinton,” George W. Bush tells the camera after he gets a moment to dry himself off.
“Yesterday was Bill’s birthday. And my gift to Bill is a bucket of cold water,” President George W. Bush said.
Vin Diesel has nominated Russian President Vladimir Putin to do the ALS Ice Bucket Challenge.
The star also put forward Angelina Jolie and Michelle Obama.
Although Vladimir Putin has not given an outright no, his spokesperson Dmitry Peskov said the President probably wasn’t aware of the challenge – and apparently has more important things to be thinking about.
Vin Diesel has nominated Russian President Vladimir Putin to do the ALS Ice Bucket Challenge (photo YouTube)
“We’ve had other things on our agenda,” Dmitry Peskov told Russian newspaper Lenta.ru.
Other high-profile names to have taken part in the campaign, which raises money for ALS Association, the US charity that helps sufferers of amyotrophic lateral sclerosis, include Oprah Winfrey, Justin Bieber, Britney Spears, Bill Gates, Mark Zuckerberg, Lady Gaga and Charlie Sheen.
President Barack Obama has already declined his nomination and has made a donation to the ALS Association instead.
After many celebrities have joined the Ice Bucket Challenge movement in the past weeks, all in hopes of raising money for ALS Association, Duck Dynasty’s Willie Robertson has also stepped up to the plate.
The Duck Dynasty star’s ice bucket video has caused quite a stir on Twitter.
On the previous day, Louisiana Governor Bobby Jindal asked Willie Robertson to take on the ice bucket challenge and donate to the ALS Association.
Louisiana Governor Bobby Jindal asked Willie Robertson to take on the ice bucket challenge and donate to the ALS Association (photo Duck Commander)
Willie Robertson was happy to accept this challenge. He posted a YouTube video of his ice bucket experience, first stopping for a quick prayer “for those suffering with this disease and their families”.
While most ice bucket challenge participants hold buckets of ice water over their own heads, Willie Robertson apparently needed a little help. He completed the challenge in front of the memorable Duck Commander sign at the warehouse in West Monroe, waiting for two of his relatives to dump a trash barrel full of ice water over his head. The relatives completed this enviable task from the roof of the warehouse, while Willie Robertson stood below.
Thoroughly soaked, Willie Robertson commented: “A lot of force…that hit me like a truck!”
The ALS Ice Bucket Challenge is an activity involving pouring a bucket of ice water on someone’s head or donating to the ALS Association in the US.
Participants get a bucket of ice water tipped over their head. Then they nominate two of their friends, who have 24 hours to tip a bucket of ice water over their own heads or forfeit by way of a charitable financial donation.
They’re raising money for the ALS Association, to research the motor neurone disease amyotrophic lateral sclerosis.
The Ice Bucket Challenge went viral throughout social media during the Northern Hemisphere summer of 2014 with numerous celebrities, politicians, athletes, and everyday Americans posting videos of themselves online and on TV participating in the event.
Although pouring water over someone’s head on the internet for charity has been around since last winter, it only went viral when the family of Pete Frates, a baseball player who was diagnosed with ALS two years ago, started their own campaign.
The ALS Ice Bucket Challenge is an activity involving pouring a bucket of ice water on someone’s head or donating to the ALS Association (photo Getty Images)
The origins of the idea of dumping cold water on one’s head to raise money for charity are unclear and have been attributed to multiple sources.
The challenge was popularized in the US on June 30, 2014, when the Golf Channel Morning Show televised the social media phenomenon and performed a live on-air ice bucket challenge.
Before the popularity of the Ice Bucket Challenge, levels of awareness, fundraising, research funds, and overall public support for ALS were extremely low.
After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations for ALS soared to unprecedented levels. On August 18, 2014, the ALS Association announced that it had received $15.6 million in donations compared to $1.8 million during the same time period, July 29 to August 18 in 2013. These donations came from both existing donors and 307,598 new donors to the Association.
This year, Steve-O questioned the campaign, suggesting that celebrities’ videos generally forgot to share donation information for ALS charities, and that the $15 million in funds is insignificant, given the star power of the celebrities participating. He noted that, of the videos he viewed, only Charlie Sheen and Bill Gates noted that point is to donate money.
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