With the help of money raised by initiatives like the Ice Bucket Challenge there has been much more ALS research undertaken in recent years. This has also made a big difference to our understanding of a disease that is thought to affect around 30,000 people, in the USA alone, at anyone time,.
In a normally functioning body, messages are sent to and from the brain via our nervous system, allowing us get up walk, talk, breath and a whole host of other things we take for granted. When the nerves that carry these impulses become damaged, it leads to numerous neurological problems.
ALS causes irreparable damage to these nerves, eventually causing them to die. The condition often begins with a weakness in one area of the body such as the hands or arms. The individual might have trouble doing up their shirt, for example, or having difficulties when trying to walk.
ALS then spreads to most other parts of the body and, as nerves begin to die, the individual will have to cope with gradual loss of muscle movement leading to eventual paralysis. About 50% of those with ALS die within the first three years of their diagnosis.
Many people remember the Ice Bucket Challenge. It went viral on social media in July and August of 2014. Participants filmed themselves being doused in ice-cold water. They then nominated some friends to do the same and encouraged viewers to donate money to ALS research.
The Ice Bucket Challenge actually started before 2014, with the aim to raise money for any charity. It became associated with ALS when a pro golfer in the US called Chris Kennedy nominated his wife’s cousin, Jeanette Senerchia who’s husband had the disease. Shortly after, the challenge went viral in places like Boston and high profile celebrities began to get involved. The rest is history and now the Ice Bucket Challenge is associated primarily with increasing ALS awareness.
Estimates suggest that around $220 million was raised worldwide by the Ice Bucket Challenge. This money has had a dramatic impact on research related to ALS and helped change our understanding in many ways about the disease.
While a lot more work needs to be done, what has been achieved over the last five years would not have been possible if the challenge hadn’t gone viral, receiving so much attention worldwide.
The change in the amount of finance available for ALS research was significant, thanks to the Ice Bucket Challenge. The ALS Association, for example, was able to pledge more than $90 million alone to global research. From just 71 scientists working on the disease in 2014, by 2018 there were 471.
But what have we learned from the research that has been undertaken so far because of the increased funding that was made available?
Project MinE, for example, has linked ALS to a new gene that may have implications for future treatment. In the past, the vast majority of cases of ALS were considered sporadic, which simply means that they were considered to have no genetic component.
The Project MinE research has raised the possibility that there is like to be a greater genetic component than what was first thought. Since the challenge, there have been five new genes discovered that seem to be associated with ALS.
It’s not just research where the Ice Bucket Challenge has helped, however. The money has also been used to open more clinical centers where specialist treatment can be provided to individuals with the disease.
ALS fundraising is not a one-off thing, however. While the Ice Bucket Challenge raised an enormous amount of money, more ALS research still needs to be carried out if we are to fully understand and find a cure for this disease.
The success of the Ice Bucket Challenge can be put down to a number of different factors. The first was the existence of social media – without it, barely a fraction of the money would have been raised.
Another factor was the challenge itself. It was something anyone could do and created a great deal of attention online. If your best friend decided to do the Ice Bucket Challenge and then chose to nominate you, you were unlikely to refuse.
Finally, there was ALS itself, a truly frightening disease with terrible consequences for those that have it. The fact that we knew so little about ALS was a driving factor that led people to take part. Social proof is also a powerful driving element in all of this and once celebrities began to get involved and the story made it into highly visible media outlets, it virtually became unstoppable.
There’s no doubt that social media can be a fantastic tool for helping spread awareness of important causes. The nature of the ALS Ice Bucket Challenge made it fun to take part in and relied on participants to nominate others to carry on the challenge, whilst also encouraging people to donate to a worthy cause.
All of these things combined to make this challenge a great success and a model for future fundraising campaigns.