The Committee

Discover what causes and what cures ALS

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.

Who we are

Valentina Occhiali
tel. 339.43.93.841

Giorgio Ghersi
tel. 335.72.72.747

Ezio Stagnaro
tel. 366.25.81.000

Aims of the “Giovanni Raffo” Committee

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.

Transparency

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.

Issues

Let’s take a look at some of the issues:

There are very few research projects aiming to combat or slow the progression of ALS. To the best of our knowledge, no such projects have been implemented so far in 2009. [x documentation]
Worldwide, there are approximately 300 trials or experimental studies focusing on how to delay the progression of ALS, but we fail to understand the criteria adopted; among them, there is even one involving thalidomide, which was responsible for the birth of a huge number of spastic children in the 1960s.
There are numerous scientific publications on ALS that are inaccurate and that merely draw up classifications, shifting the problems without solving them, focusing more on furthering the careers of the authors or enabling them to draw on funds for research, rather than on making any serious attempt to identify the cause or the cure for ALS. [x Mail]