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Lou Gehrig’s Disease


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

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.


Toto bass-player Mike Porcaro has died at 59 after a long battle with motor neurone disease (MND), also known as ALS.

The rock band is best known for its hits Africa and Rosanna.

The band’s keyboardist Steve Porcaro said in a statement that his brother had died peacefully in his sleep at home, surrounded by family. Michael Joseph Porcaro passed away on Sunday, March 15.Mike Porcaro died from ALS at 59

Toto, which broke up in 2008, reformed in 2010 to raise money for Mike Porcaro and raise awareness of his illness.

Also known for the hit Hold the Line, Toto sold 35 million albums.

Toto guitarist Steve Lukather wrote on Facebook that Mike Porcaro was “now at peace”.

Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS)or Lou Gehrig’s disease, is a rare condition which attacks the nervous system.

As the condition progresses sufferers find basic activities such as walking, speaking and breathing increasingly difficult.

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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

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.

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