This article first appeared in a 2015 issue issue of the The Information Point newsletter Our World, when Daniele Oliveri told the Information Point about an informal Italian MTM meeting that took place in Italy over the weekend of 14 and 15 November 2015.
Following the example of many CNM/MTM families all over the world three Italian families recently decided to meet each other – Alessandro Lollobrigida, his wife Claudia and their fantastic baby Mare, Ivan Tonini, his wife Chiara Deli and their amazing guy Mattia and me, my wife Marta and our handsome Francesco spent a whole weekend in Florence.
After the birth of our sons we understood that alone we lose, instead together we win, we are stronger. We are few, but it is only the beginning. At the moment we are four families but one of those was unable to attend the meeting. The community is really strong and each of us can take something from the community – experiences, advice, support. Being a part of a community allows us to feel less alone in the fight against this disease. Furthermore as a community we can look towards the world as a group and not as individual families.
Based on our experience we urge all CNM/MTM families all over the world to search for other families and gather in group. During this weekend we felt at ease. We shared the same problems, the same fears and the same experiences. It was fun to walk the streets of Florence together with ventilators, suction machines and oximeters.
We agreed to meet each other again very soon in order to spend more time together and in order to start creating an Italian CNM/MTM organisation, with the main purpose to raise funds and help research.
Special thanks to Holger Fischer, his wife Jennifer and their incredible son Emil for the inspiration.