We have been invited, together with many other international associations, to attend the National Congress of the Italian ACMT-Rete Associationthat was held in Venice simultaneously with the CMTR CONSORTIUM. Luisa and Giovannella, who attended the event on behalf of our own association, have been warmly and gently welcomed: they said it was “a unique experience”. Only our concomitant event “Il Pranzo del Sorriso” has prevented us from being highest in numbers!

The Congress, which involved more than 100 members from all over Italy, was organised in every detail. Moments of great scientific interest have been filled with some leisure time culminated in the beautiful and fun Gala event dinner attended on Saturday evening by the representatives of the associations along with a large group of doctors and researchers in an atmosphere of friendship.

Opened by the President Donatella Esposito along with the organisers of the concomitant Consortium (first and foremost Dr Pareyson), the Conference was full of interesting topics concerning Charcot-Marie-Tooth disease. They have been discussed by many prominent specialists together with a large number of researchers coming from Italy and all over the world. We very much appreciated the willingness of them to hear and answer the audience questions, sometimes giving rise to very interesting debates.

The Conference started on Friday morning and the most important topics were :

the most common symptoms associated with CMT in adults and children;

• the psychological aspects of the disease (psychologists, Dr Genovese and Dr Tupputi, remained available also in the following days for private conversations with patients)
• an early update on research relating to CMT treatment through the reports of Professors Shy and Zuchner from USA, Burns from Australia, Sereda from Germany, Bolino from Milan and Reilly from UK. The advanced and innovative studies presented by those prominent academics gave us much more hope, although we need to consider the length of the research as well.
• an interesting introduction to the project ““ MicroRNA as an innovating approach for CMT ” held by nutritionist Dr Cannataro;
• a report made by Dr Casale on the current situation about the use of robotic devices for CMT rehabilitation ( treatment used in the Hospital of Bergamo) However, it has been pointed out that this kind of rehabilitation isn’t meant for every patient, but it is based on a comprehensive individual assessment;
• the rehabilitation of CMT carried out at the Bozzolo Hospital, the maintenance and prevention paths;
• the latest news about hand and feet surgery and about post-operative rehabilitation;
• plantars and orthoses in the peripheral neuropathies.

Thanks to Filippo Genovese who arranged the simultaneous translation and gave us, together with his colleague Dr Tupputi, updates on what was going on in the concomitant CMTR CONSORTIUM.

Furthermore, many doctors have undelined the importance of joining the italian register of CMT patients (that is conneceted to the america one), and the need to conduct genetic tests in order to know exactly the gene causative of CMT. These actions will allow us to gain a faster entry to trials and help researchers to collect useful data.

Finally, Sunday morning was firstly dedicated to the international associations, including Progetto Mitofusina 2, which introduced themselves, their objectives and activities to the audience.

Then we introduced the project “TOGETHER WE CAN”, whose aim is to create a Consortium of CMT European Associations.

We think it’s an interesting initiative, very useful for European patients (there are more than 200.000 ), that will make it also possible to develop a better cooperation between CMT associations worldwide, in particular with the ones attended the Conference (Usa and Australia). We can only anticipate, with great pleasure, that the creation of the Consortium has just been carried out.

Thanks to the President Donatella Esposito, to Rita Riccò and the organising committee; to Filippo Genovese, Marina Garcea and her “Friends for life” (amazing ladies making wonderful jewels of buttons that nobody can resist); to the brave and strong members of ACMT-Rete…for welcoming us in that way! See you at the next Congress!! We are very pleased to continue our very good cooperation because TOGETHER WE ARE STRONGER!

For more details about the Conference, please visit ACMT-Rete web site and its Facebook Page.

FOTOSTORY