HAS THE ICE BUCKET CHALLENGE REALLY INCREASED PEOPLE'S AWARENESS OF AMYOTROPHIC LATERAL SCLEROSIS? INSIGHTS AND ETHICAL IMPLICATIONS FROM GOOGLE TRENDS AND WIKIPEDIA: A 2 YEARS-FOLLOW UP

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, is the most common form of motor neuron diseases (MNDs), causing the death of neurons controlling voluntary muscles. In order to increase public awareness and to promote fundraising, a charity activity known as the "Ice Bucket Challenge" (IBC), initially started only as a joke, was launched in July and August 2014, by Pete Frates, ex Boston College baseball player and himself suffering from ALS. Immediately, it became "viral" among social media and social network users, worldwide. We used Google Trends (GT) and accessed to Wikipedia page to document interest towards ALS 2 years after the IBC. In coincidence with the IBC initiative, a peak in web queries could be noticed, as well as a burst in daily accesses to Wikipedia page. However, this increase in web activities (+450% for GT) was characterized by a brief memory and a short half-life: before and after IBC initiative, GT-based RSVs were 18.2 +/- 1.7% and 17.8 +/- 1.9%, respectively. Despite alleged claims of the effectiveness of social networks-based campaigns, apart from money donation and a temporarily burst of web queries and accesses to specialized web-sites, before and after the IBC the level of web-related activities has remained practically constant. The direct involvement of scientists and stakeholders, besides that of celebrities and famous people, would be of crucial importance. Only in this way, initiatives such as the IBC could turn from mere entertaining events even though money-attracting into real educational moments. Otherwise, they would be other missed opportunities.