Event #1

In the 1980s a group of scientists from various parts of the world landed on lake Maracaibo, in the North-West of Venezuela, to study the origin and causes of a neurodegenerative disease known as Huntigton’s chorea, which has its highest incidence in those areas. This year, some of the Venezuelan families struck by the disease were welcomed in Rome by researchers, scientists and representatives of Italy’s highest institutions. The network that connects these two experiences starts with Maria Concepción Soto – who lived in the village of Lagunetas at the end of the 19th century and is considered one of the progenitors of the disease – and, from generation to generation – an estimated 20.000 descendants – it reaches Maria Esther Soto Soto and her brothers, Franklin and Yosbely; Pope Francis expressed to them that the disease they’ve inherited from their father should never again be hidden, because the frailty of their bodies is not a sin to be ashamed of. This network intersects laboratories all over the world that study the gene that causes the disease, testing new treatments and medicines to alleviate its symptoms until a cure is found. It traverses the desks of the American, British and Canadian researchers who in 1993 identified the mutated gene responsible for Huntington’s, and current experiments on neuron transplants from stem cells and gene silencing which aim to defuse the diseased genes. As research focuses on how this billion-year old gene has survived through our species’ evolution, relationships and connections between laboratories continue to be formed, interconnecting with society, the people afflicted, associations, institutions and vice-versa. These are the networks that are good for science, that support the ill and allow many people to live their humanity to the fullest.