The “Giovanni Raffo” Committee stems from considerations on the experiences of Raffo as a patient with ALS (amyotrophic lateral sclerosis) and Stagnaro as the father of a patient with second motor neuron disease (sometimes described as indolent early-onset ALS).
They have given a lot of thought to their various experiences of the progression of this disease, of their exchanges with one or other medical team, of the numerous hospital stays and tests relating to the disease, and of the scientific research conducted to combat ALS.
To procure funds for the creation of a Research Foundation aiming to discover what causes ALS and the best treatment for the disease by organizing competitions for two-yearly study grants… By treatment for ALS, we mean completely and definitively stopping the progression of ALS.
This Committee is not only non-profit, and all the money it receives, right down to the last cent, will be spent to finance research projects, which means: study grants, travelling expenses, visits and stays at specialist centers in Italy and abroad.
We wish to be perfectly clear on this point because in Italy and around the world there are numerous “non-profit” institutions, but the funds they receive from charities or other humanitarian sources are spent mainly on the upkeep of the institution concerned – on salaries for personnel (secretaries, presidents, …), for instance, or on the purchase of computers, printers and stationery, or to pay telephone bills, for the hire of machinery and/or offices, and so on.
The “Giovanni Raffo” Committee has none of these expenses. In particular, the costs of this website are our own responsibility, as private citizens.
Let’s take a look at some of the issues: