If you’ve been a user of Facebook for longer than a year, the odds of someone in your network posting a video of the ice bucket challenge are pretty great. After all, it was all the rage in 2014. But do you recall what charity the ice bucket challenge raised funds for? …ALS.
Funds raised by the ice bucket challenge exceeded over $115M in a SINGLE month. Those funds helped support research that uncovered a gene variant associated with ALS. It also demonstrated the huge value of scientific collaboration.
In the near term the NEK1 gene variant, described in the journal Nature Genetics, will help scientists understand how the incurable disorder, known also as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease, takes hold. Once the mechanisms are more clearly elucidated, it may steer researchers on a path towards much-needed treatments.
The finding may never have happened if it weren’t for the challenge and appeal of the ALS Ice Bucket Challenge. The research grants that scientists were awarded did not get close to the amount of money needed for the actual study though. Instead, Project MinE, which aims to unravel the genetic basis of the disease and ultimately find a cure, was funded by the ALS Association through ice bucket challenge donations, which helped supplement the additional monies needed to fund the study.
Project MinE was founded in 2013 by Bernard Muller, a Dutch entrepreneur, who was diagnosed with the disease in 2010. Muller decided to turn his business skills to finding a solution. Project MinE, starting with thousands of untested blood samples of ALS patients that was gathering dust in a lab in the Netherlands.
He said that when he saw the ice bucket challenge play out on social media, he was thrilled, adding that he was honoured that his project was chosen as a recipient of funds.
“It was one of the most successful campaigns on social media, it came out of the blue,” he said. “The funding has helped us with research, but it has also had a profound effect on the attention not only on the general public but also in biotech and pharmaceutical companies – we are seeing more and more thinking that ALS should be a target [for research].”
The viral campaign was only the start of the crowdfunding effort that brought in the research money. “It was the first and the largest and the most important crowdfunding activity, but then there were city swims in Amsterdam and in New York, and then cycling events,” Veldink said. “The only way we could do this research was through those crowdfunding projects.”
Millions took part in the ice bucket challenge and submitted to a bucket of iced water being poured over their head in return for donations to the charity and the chance to nominate others to follow suit.
Veldink’s team of 80 researchers in 11 countries discovered the link between NEK1 and motor neurone disease by comparing the genomes of thousands of patients with the DNA makeup of healthy controls.
The NEK1 variant appears in only 3% of patients, suggesting more genes that raise the risk of motor neurone disease are out there to be found. But what is known about NEK1 has already got scientists thinking. The gene appears to help repair DNA damage that accumulates as we age. That ties in with motor neurone disease being rare in the under 40s and normally only emerging when people reach their 50s and older. Should the new variant of NEK1 work less well, faults in DNA could build up as people grow old. “It may be that DNA repair is less efficient than in healthy people,” Veldink says.
Sally Light, chief executive of the MND Association, said: “Motor neurone disease is a devastating disease and kills more than half of people within two years of diagnosis. It’s fantastic that the money raised globally from the Ice Bucket Challenge has contributed towards the discovery of this new gene.
“It’s another step towards understanding so much more about what is such a complicated disease. A huge thank you to everyone who poured iced water over their heads; their support is really making a difference in our fight against MND.”
In efforts to continue the research to help find a cure for ALS, we ask you to participate in our ALS Art Affair. Join our guest of honor, Jan Giordano, her creative friends and admirers, and members of your community in a night surrounded by art and music to raise funds to support research to help defeat ALS.
The evening includes wine, beer, passed hors d’oeuvres, musical entertainment, raffle, and a silent auction of original works of art by local artists.
ALS Art Affair proceeds will support Emory ALS Clinic, which combines state of the art clinical care with cutting edge clinical and basic research. The Emory ALS Clinic provides multidisciplinary care to ALS patients and their families, focusing on independence and quality of life through state of the art intervention. Their research focuses on basic mechanisms of motor neuron degeneration, genetics of ALS, and new experimental treatments.
“I am so grateful for your efforts toward raising funds to cure ALS in my honor.” -Jan Giordano
For more information about how you can purchase tickets or become a sponsor, please visit our About Us page or CLICK HERE.
(Source: The Guardian, https://www.theguardian.com/science/2016/jul/27/how-the-ice-bucket-challenge-led-to-an-als-research-breakthrough)