Two years ago, the ice bucket challenge sought to raise awareness about a deadly disease called amyotrophic lateral sclerosis (ALS). Thanks to the viral challenge, six projects have been funded and discoveries were made.

In the summer of 2014, it seemed very normal that people threw icy cold water over their heads since it was for a good cause. The ice bucket challenge started as an initiative to make people more aware about ALS and it soon went viral. All sorts of celebrities, public figures, and common citizens were being soaked in icy water as they nominated others for the challenge. According to the ALS association, over 17 million people participated in the campaign.

The ice bucket challenge consisted of a person being soaked in ice water for the cause, to then nominate three other friends to perform the challenge. The nominees only had 24 hours to perform their icy challenge and record it. Image Credit: Free Thought Project
The ice bucket challenge consisted of a person being soaked in ice water for the cause, to then nominate three other friends to perform the challenge. The nominees only had 24 hours to perform their icy challenge and record it. Image Credit: Free Thought Project

According to the ALS association, over 17 million people participated in the campaign. From President George W. Bush to Donald Trump, Justin Timberlake, David and Victoria Beckham, Will Smith, Anna Wintour, Rita Ora and hundreds of celebrities participated in the awareness campaign.

If a nominee for the ALS challenge didn’t want to get soaked, it had the chance to help ALS patients by donating whichever amount of money they wanted. As it was the case of President Barack Obama, who donated an unknown amount to the cause. All of the ice bucket challenge participants recorded their soaking challenge and published it on Facebook and Instagram. The ice bucket challenge soon became a viral stunt on the internet, which made it gain a lot of criticism for just being a stunt.

Many of the critics assured the challenge became more of a game than an awareness campaign for a serious and deadly disease. Two years after the viral challenge ended, scientists and researchers are announcing a new discovery on the ALS disease and it was possible thanks to fundraising over the ice bucket challenge.

Genetic therapy

The ALS Association announced on Monday the most recent discovery of the deadly disease that paralyzes patients, who slowly lose their abilities to breath and move.

Over $100 million were raised in 30 days, thanks to the ALS viral challenge, making it possible to create project MinE and making it the biggest research study on the disease.  MinE, is in charge of studying the inherited form of the  ALS disease, Researchers were able to discover a gene, known as NEK1, which contributes on the forming and developing of ALS in patients.  Thanks to the discovery, scientists might be able to develop a genetic therapy to fight NEK1.

Even Though, only 10% of ALS patients suffer from the genetic development of the disease, researchers believe that by finding NEK1, all ALS patients can benefit from the possible genetic treatment, since the gene is present in all forms of the disease.

Project MinE, was formed by over 80 researchers and scientists from 11 different countries studying the disease and its possible causes, regarding genetics.

“The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” said Lucie Bruijn of the ALS Association

Bruijn, also notes, that Project MinE and its discoveries were only possible because of the ALS ice bucket challenge. Since it allowed the association to invest in research and create large biorepositories of ALS biosamples, that made the discovery possible.

The ice bucket challenge got so popular, TV stars and Movie Stars began to do it as well as renowned athletes. Image Credit: Comedy Wire
The ice bucket challenge got so popular, TV stars and Movie Stars began to do it as well as renowned athletes. Image Credit: Comedy Wire

Vice-president of ALS communications, Brian Frederick, stated his excitement about the discovery as he explained how people that took part in the ice bucket challenge, could see the results of their contribution.

By finding the NEK1 gene, that takes part in the development of the disease, researchers might get a glimpse of what triggers ALS and find a possible cure for the deadly disease. The project had been working on sequencing the genomes of over 15,000 people suffering from ALS. The recent discoveries have been published in the journal Nature Genetics.

Understanding ALS

Amyotrophic Lateral Sclerosis or ALS, has been found to be a neurological disorder that affects motor neurons, which control muscle function, these neurons happened to die in patients suffering from the disease. Making them, lose their ability to move, talk and even breathe.

ALS is categorized as a rapid and deadly disease that also affects the spinal cord of patients, the only nerves that are not affected by ALS are sensory nerves. The disease is also known as Lou Gehrig’s disease, after the US baseball player who was first diagnosed with ALS in 1936, at the age of 36-years old. Even though ALS can affect teenagers and young people, it is more common in patients over 40 years old and the first symptoms tend to show in older adults in their 60s.

The disease doesn’t care for race, ethnicity or family history since it can affect anyone at any moment.  According to the BBC, over a third of people in the world, dies of ALS within a year of their diagnosis.

Since there is no found cure for ALS, the only treatment patients get is relief in possible pains as physicians and family members make the patient feel comfortable and cared for. The most known person, suffering from ALS is the genius and scientists Stephen Hawking, who has outlived his time of diagnosis.

The ALS association research is being led by an entrepreneur called Bernard Muller, who also suffers from ALS.

Source: BBC News