With large parts of continental Europe currently enduring a severe heatwave, maybe some people will remember, with fond memory, the ice bucket challenge. A year ago the challenge went viral on social media and my inaugural post featured a friend of mine doing it too. People were pouring buckets/pots/canisters of ice-cold water over themselves to raise awareness and donations for a rare disease called amyotrophic lateral sclerosis (ALS), a type of motor neuron disease (MND). One person went to even greater lengths and had glacial water released over him from a helicopter. Celebrities joined the challenge too and even Homer Simpson poured a cup of cold water over himself.
At the time, my main concern was that not enough of the donated money – a whopping $115 million in the USA and £7 million in the UK – would go into (basic) research. However, according to ALS Association approximately two thirds of the money is being channelled into various research projects. For instance, a $5 million chunk went to a collaboration between several labs based in California that investigate how nerve cells/neurons can be isolated from patients and grown as stem cells in the lab. Once this is achieved, these cells can be used to study the properties of affected neurons in more depth and eventually to test new drugs before giving them to patients. Another approach will be using $3.5 million to sequence the genomes of patients suffering from ALS and thereby find out what genetic signatures are associated with the disease. Overall therefore, my initial scepticism seems to have been unfounded since a large chunk of the money is indeed being invested in research. [To put these figures in perspective, however, let me just add that, on average, it takes ten years to produce a new drug with an associated cost of at least $1 billion.]
Apart from research, other funds are going into patient care, such as providing improved intravenous nutrition and better mobility aids, such as walking sticks, rollators and wheel chairs. Additionally, the ALS Association is investing in education and spreading the awareness for MND even further and lastly, it is trying to motivate people to re-do the ice bucket challenge this August. And if that all goes to plan I’ll write again in a year, hopefully reporting on advances in the field and maybe with some news on the early stages of development of a new drug.
A newspaper article in the Guardian.
A CNN article.