AICARM NEWS – July – August 2023

Second installment of the AICARM News series on the answers doctors, analysts and therapists give to the most frequent questions they hear from patients. This time to answer is Guendalina Rossi, psychiatrist and psychotherapist. These are five questions that summarize the doubts, worries and anxieties of those who encounter the disease for the first time. "The answers - says Dr. Rossi - certainly do not exhaust or fully satisfy the curiosity and the need to know, but we hope they can stimulate interest in further study".

Everything is ready for the presentation of Il Cuore Grande, stories of women and men facing the challenge of cardiomyopathies, the book was born around the stories of twenty patients, or their families, edited by the journalist Laura D'Ettole and Professor Franco Cecchi, President of AICARM. Starting in October, the Association will give life to a series of initiatives, starting with the presentation to the public and the press (Villa Bardini, 14 October). As an anticipation for those who have not already had or have obtained the volume, which is distributed free of charge to members who request it, we are publishing one of the twenty testimonials.

Also this year, AICARM Onlus took part in the CardioMYopathy Awareness Week, an important global initiative dedicated to raising public awareness of cardiomyopathies and the genetic analysis useful for identifying the gene or genes responsible for the development of cardiomyopathy.

July was a month full of collaboration agreements that promise important future developments. On July 4, AICARM signed an agreement with the department of surgical, medical, molecular and critical area pathology of the University of Pisa (Dmsc) for a collaboration in the field of scientific research and in particular with Prof.ssa Smorti, associate professor of Psychology. On 24 July it was the turn of the memorandum of understanding with the Florentine Meyer Children's Hospital to define the operational functions of the volunteers within the facility.

The Dmsc is one of the largest and most prestigious departments of the University of Pisa and its objective is the promotion and coordination of research activity in the fields of experimental and clinical medicine. In parallel, AICARM, in its statute, explicitly provides for the contribution to scientific research with various institutional subjects, as well as the dissemination of information on cardiomyopathies. Thanks to these premises, the Pisan partnership intends to develop the planning, financing, sharing of scientific research and the development of social-health assistance for patients suffering from cardiomyopathies. Responsible for the scientific research paths are Franco Cecchi for AICARM, and Martina Smorti for the Dmsc.

The protocol signed by AICARM with the Meyer Children's Hospital underlines and recognizes the great value of the presence and action of volunteering within the hospital walls. With this act we intend to follow up on the principles explicitly provided for by the Tuscan legislation on volunteering. The primary task of the volunteers is to collaborate with health professionals to create a positive welcoming atmosphere for young patients and their families. They will have to help young people solve small practical problems in the absence of their parents, collaborate in complex ludic and recreational activity projects that make the Meyer one of the most advanced structures nationwide. All this, of course, in strict respect of privacy which protects the life and health affairs of minors. Individual volunteers called to carry out this delicate activity will have to follow a general training and information course with an annual programme, in addition to the one already foreseen by AICARM. (L.D'E.)