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amyotrophic lateral sclerosis


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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Being a famous athlete puts you in the spotlight. Because of this, every piece of your life becomes public knowledge; from the places you vacation to the people you date and even to your overall health.

Through the years, many famous baseball players have been the victim of various diseases and illnesses. Some of these baseball players were able to treat the disease while others eventually lost their battle.

Take a trip down memory lane and learn about the many diseases that have affected baseball players through the years.

Photo: Rosie Huntington-Whiteley via Instagram.

Photo: Rosie Huntington-Whiteley via Instagram.

Lou Gehrig and the Ice Bucket Challenge

Lou Gehrig may just be the most famous baseball player known for a disease. After all, he has a disease named after him. Lou Gehrig, otherwise known on the field as The Iron Horse, played first base for the New York Yankees for 17 years. In 1939, Gehrig was diagnosed with ALS, or what some currently refer to as Lou Gehrig’s disease. ALS is a progressive disease in which the nerve cells of the brain and spinal cord become degenerate, resulting in paralysis.

Ron Santo

Ron Santo was an American baseball player for the Chicago Cubs. Santo was an All American player, earning many achievements and accolades throughout his career despite battling type 1 diabetes. In fact, Santo hid his diabetes for more than 80 percent of his career. After his retirement, he ended up having the lower half of both his knees amputated. Santo died in 2010.

Brett Butler

Brett Butler was an outfielder for the Miami Marlins and Los Angeles Dodgers in the 1990s. In May 1996, Butler found out that he had squamous cell carcinoma in his tonsils, which required surgery and intensive treatment. Just four months after surgery, Butler was back on the field for the Dodgers, and even scored the winning run.

Ben Petrick

Ben Petrick is a former baseball player who had careers in both the minor and major leagues. He played for the Colorado Rockies and the Detroit Tigers from 1999 to 2004. In 2004, after noticing that his statistics and skill had fallen, he announced his retirement from baseball and disclosed that he had been diagnosed with Parkinson’s disease.

Josh Hamilton

Whether for recreation, medical or steroidal use, many baseball players have been affected by some form of drug abuse. Josh Hamilton is the poster boy for baseball players with a drug problem. Hamilton suffered from drug addiction and alcohol abuse, and finally decided to fight his illness when confronted by his grandmother. Although he has been sober since 2004, in order to stay on track, Hamilton undergoes drug testing three times every week. And when his team achieves something great, Hamilton’s teammates opt to celebrate with ginger ale instead of alcohol to accommodate their teammate and keep him sober.

Baseball is America’s past time, and through the years, America has come to love many different players. Unfortunately, although we look up to these athletes, they’re not superheroes, and they too are affected by illness and disease just like everyone else.

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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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

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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