How did you find out about AICARM and how did you get involved with the association?
I learned about AICARM in 2022, when my husband had to undergo surgery to implant a defibrillator. At that moment, I found myself, as a caregiver, having to understand what a defibrillator meant in everyday life. I knew that the defibrillator would, in part, impact daily life, to give a trivial example, the driver's license.
We can say that it started a bit by chance. I did a search on Google and there I discovered AICARM, I contacted the association and spoke with Marco, from that moment my adventure as a volunteer began. Immediately after meeting some members of the association, I joined as a member. Both Professor Cecchi from Florence and Professor Crotti from Milan explained to me what the role of the association was and its mission and that they were trying to create a nucleus also in Milan after the historic one in Florence. In Milan everything had to be invented, I got in touch with Annalisa and Matteo, two very precious members with whom I immediately started working.
Which of AICARM's activities did you decide to get involved in?
As I mentioned, the Milan unit is very young, and there are only a few of us currently active. This is why we've decided to focus on two fronts: communication and patient support. Having a background in biology, together with Matteo Pinciroli, we spearheaded the 2022 campaign to raise awareness of genetics in cardiomyopathies. Thanks to the support of two geneticists in Bergamo and Florence, we were able to develop a survey to evaluate the availability of genetic testing for patients with cardiomyopathies.
This survey allowed us, in 2023, to gain a snapshot of genetic testing management, its availability, how it was offered, and how the data was presented. Furthermore, together with Professor Crotti, we began working on the topic of psychological support for patients with cardiomyopathies, and this allowed us to involve two psychologists within Auxologico to launch programs. We also began to raise awareness of the association, which is crucial for me. In this regard, we also held courses for expert patients in Milan, including one this year, during which we, as a patient association, had the opportunity to have a slot to present the association and its activities. Three patients shared their experiences, how they felt at the time of diagnosis, and how they live today. There were many participants, and we also received many questions and generated a lot of interest.
How you can help AICARM
Join us in supporting those living with heart disease. You can contribute by becoming an active member of the association or by supporting our initiatives with a donation.
