Daniele Oliveri is the President of a new patient organisation in Italy called FIMM. His son Francesco is diagnosed with myotubular myopathy. Below Daniele writes about his reasons for founding FIMM and what he hopes the organisation will achieve in the future.
The first time I thought that it could be useful create a patients association, was a couple of years after my son Francesco’s birth, when I met for the first time some other European patients associations, joining their families conferences.
At least four years have been passed from that period and now, finally, I’m really proud to announce that the first Italian patients organisation totally focused on myotubular and centronuclear myopathies has been officially founded.
We are just born and we have to grow up and learn but our inner motivation is really strong and we are ready to learn even from other patients organisations experiences.
Our mission is to increase MTM/CNM disease awareness, in order to speed up the diagnosis and to improve the disease management, create a patients families network in order to give help, share information and experiences with each other and in general share the acquired knowledge. Another important target is to support research to find a possible cure.
We will find the inspiration and the strength to go ahead from our patients, and we will work all together saying always aloud “mano nella mano verso la cura”.