Earlier this week, the first ever working meeting between FIFA's Chief Medical Officer, Professor Jiri Dvorak, and the scientific board of the Stefano Borgonovo Foundation was held at the Home of FIFA in Zurich. The meeting enabled both sides to exchange experiences regarding the severe and currently incurable neurodegenerative disease amyotrophic lateral sclerosis (ALS) in sport (including football).
One of the primary aims of FIFA's Medical Assessment and Research Centre (F-MARC) is to get a more accurate assessment of the relationship between ALS and sport - including football - to provide the basis for further epidemiological studies.
Progressive muscle weakness
Amyotrophic lateral sclerosis (ALS) is a severe neurological systemic disease which leads to the progressive loss of the central and peripheral motor neurons (which are responsible for muscle functioning) and to early death. The disease affects two to three people per 100,000.
According to estimates, around 350,000 people around the world suffer from ALS. The disease causes an asymmetrical progressive muscle weakness, with the arm and leg muscles and also those required for breathing, talking and speaking affected. And despite various theories being advanced, a definitive cause for the illness is unfortunately yet to be found.
Borgonovo takes up the cudgels
Former Italian international striker Stefano Borgonovo (47) was diagnosed as suffering from ALS six years ago. The father-of-four went public about his terrible illness in 2008 and at the same time created the Stefano Borgonovo Foundation with his wife Chantal to raise money for research into ALS, as well as publishing his book "Born striker".
Borgonovo, who won the European Cup with AC Milan in 1990, is now bed-ridden. His body is totally paralysed and he can only move his pupils, which he uses to control a word processor which is now his only remaining means of communication with the outside world. The "monster" as he describes his illness has robbed him of all his other faculties.
Chantal Borgonovo was present at the meeting with Dvorak and other FIFA experts and accompanied by Italian neurologists and epidemiologists specialised in the study of ALS. Dvorak, who is a neurologist specialising amongst other fields in peripheral neurology, has been researching ALS in sport for over a decade now.
Optimism tempered by realistic expectations
FIFA President Joseph S. Blatter has of course long been made aware of Borgonovo's illness and the striker's unflinching willpower. "I met Chantal and Alessandra Borgonovo, the wife and daughter of Stefano, the former AC Milan and Fiorentina player, at the 2012 FIFA Ballon d'Or Gala," Blatter said. "Stefano is suffering from ALS, which is a very severe nerve disease which has left him paralysed. Despite the illness however, his love of football is as strong as ever and he still runs a football academy. Stefano has my every sympathy and support."
"Collecting and exchanging data plays an important role in the awareness and analysis of this illness which has yet to benefit from a great deal of research," explained Dvorak, who addressed the subject of the disease in May at the FIFA Congress in Budapest, and is both optimistic and realistic regarding progress.
"Never give up"
"We have little in the way of data to be able to form a definitive opinion, and at the moment there is no therapy available for ALS sufferers," he continued. "Despite many recent discoveries, we still have a lot of work ahead of us." Scientist Stephen Hawking however is an example of someone who has lived for decades with this debilitating illness. "The fight is a tough one," Chantal Borgonovo added, "but I am convinced that it is not a hopeless one. And whatever happens, we will never give up."