What can a bucket of icy water achieve?
It was a worldwide craze that celebrities old and young took part in. Bill Gates, George Bush, Benedict Cumberbatch, Tom Ford, David Beckham, Rihanna, Taylor Swift, Lady Gaga, and Justin Timberlake to Hilary Swank, Robert Downey Jr.,Oprah and Kim Kardashian are just a few.
Just about everyone I knew did this in 2014. It seemed like the craze of the summer…..literally everyone threw icy cold water on themselves and then kindly nominated someone else to do it. As the summer progressed, it was amusing to watch the new and novel ways of completing the challenge that emerged. One of my friends ingeniously swam in a freezing lake instead of having a bucket of ice thrown on her. There were videos of builders, comedians, teenagers and old ladies doing it and as these videos went viral it seemed that everyone loved to watch people get soaked. The videos were amusing but they had a serious incentive behind them. Why on earth was everyone doing this and what started the craze?
The man widely credited with popularising the challenge is former Boston College baseball star and ALS sufferer Peter Frates, who has devoted his life to raising awareness and research funds for the disease since being diagnosed. You can read his story here:
His story is incredibly moving as he describes being diagnosed with Motor Neurone Disease. He says “I once prided myself on my strong hands. They helped me become a baseball star and eventually captain the Boston College Eagles in 2007. They helped me grip the bat, fire the barrel through the zone and squeeze a fly ball safely into my outfield mitt. Today, they are unable to type this very story, as I depend on eye-tracking technology to deliver the message that my sturdy voice and fingers once did”. Ironically, Pete was a baseball player just like Lou Gehrig a successful and famous baseball player who voluntarily took himself out of the line-up after his play was hampered by amyotrophic lateral sclerosis (ALS). This is an incurable neuromuscular disorder now commonly referred to in North America as Lou Gehrig’s disease. The disease forced him to retire at age 36 and was the cause of his death two years later.
What is amyotrophic lateral sclerosis (ALS) (as it is referred to in the USA) or Motor Neurone Disease (as we know it in the UK)? The French Neurologist Jean-Martin Charcot first described motor neurone disease (MND) in 1874. The term motor neurone disease, describes a group of related diseases, affecting the motor nerves or neurones in the brain and spinal cord, which pass messages to the muscles telling them what to do. MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The muscles first affected tend to be those in the hands, feet and mouth, dependent on which type of the disease you are diagnosed with. Early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons. It can be some time before someone feels it necessary to see a GP. The disease affects each individual in a different way, so there is no definitive set of symptoms. In recent years there is evidence to suggest the incidence of motor neurone disease (MND) is increasing. This could possibly be due to more accurate diagnostic testing. Also, as people are generally living for longer, the incidence of a disease more common in older people will continue to increase. MND can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70. Men are affected more often than women.
Speech and language therapists often work with MND sufferers to give support with communication and swallowing, both of which can become problematic as the disease progresses.
The global ice bucket challenge was cited as one of the most successful social media campaigns ever, with serious implications. It raised awareness of the disease amongst the millions of people who participated in it, and is thought to have raised approximately £88 million in a single month. This money has been put to excellent use; as the research grants that scientists are awarded do not get close to the cost a study requires. On the 27th July 2016 scientists funded with the proceeds of icy water drenches, announced that they had made a breakthrough. Having funding has enabled researchers to discover the NEK1 gene, which contributes to the kind of MND which is passed on in families. Belinda Cupid, head of research at the UK Motor Neurone Disease Association, says “this discovery identifies exactly what one of those contributing factors may be towards developing MND”. “It’s a small thing that won’t cure MND on its own but it makes us understand a little bit more so we can develop treatments quicker.” “It means getting doused in ice cold water in your garden two years ago could have had a big impact on the medical world”. Jan Veldink, who led the latest research at University Medical Centre in Utrecht, said that “it was more than money that made the difference. ALS charities in the US, UK, the Netherlands and elsewhere joined forces to make the project happen”. 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.”
It is really wonderful that what was really a fun prank for any of us during a very hot summer, managed to raise so much money and do so much good. That is why I have chosen to feature MND in this month’s blog. It was good that we could all work together to learn more about it, share with each other and create funds for research. If you go on the MND website you can fund this really moving blog post from the daughter of an MND sufferer:
She said “over the past two or three weeks, there has been a global phenomenon called the Ice Bucket Challenge for MND and to any of you who regularly read my blogs you will know how MND is currently in my life. I can’t tell you how AMAZED I am that MND is finally getting acknowledged by so many people who had never heard of it before and are learning all about the disease! Everybody who is affected by this disease wants awareness, awareness, AWARENESS and we’re now getting it! Fantastic!! This craze will eventually stop, but MND never stops affecting those who are living with it and it will never leave the families who have lost a loved one from the disease. We will forever live with the memories and emotional pain that MND brings along with it”.
Written by Alison Mann on behalf of Integrated Treatment Services