The new medical scientific commission of Aisla, the Italian Amyotrophic Lateral Sclerosis Association, officially began its activity today. Made up of a selected group of highly qualified professionals in the medical-scientific field – explains the association in a note – this commission, which will remain in office for the next 3 years, was formed with the aim of guiding and supporting the mission of Aisla in combating amyotrophic lateral sclerosis (ALS) with a multidisciplinary approach.
“I am convinced that this group of highly qualified professionals – states Fulvia Massimelli, national president of Aisla – will help us face the challenges related to ALS with determination. Aisla's 2024-2027 Program Plan, which will be developed by this commission, will represent a guide important for the association's future activities. I am sure that together we will be able to make a significant difference in the lives of people with ALS and their families.” Leading the commission is Mario Sabatelli, clinical director of the adult area of the Nemo Clinical Center at the Gemelli Polyclinic in Rome. The specialist has extensive expertise in the diagnosis, study and treatment of ALS, particularly in the areas of characterization of clinical phenotypes, pathological anatomy, genetics, immunology, as well as palliative care and bioethical aspects.
Experience in the field of bioethics is represented by Luisella Battaglia, one of the prominent members of the commission, founder of the Italian Institute of Bioethics and member of the National Bioethics Council. Paolo Banfi, pulmonologist at the Don Gnocchi Foundation in Milan, has vast experience and expertise in the treatment of the pathology from a respiratory point of view. Another important figure is Giorgio Calabrese, former professor of food and human nutrition at the University of Eastern Piedmont in Alessandria. Defined as a “science laborer and health ambassador”, Calabrese was awarded among the “100 Italian excellences” for his significant contribution in his field of expertise.
To respond to the need for multidisciplinary management of the pathology, three new professional figures were included in the commission: Daniela Cattaneo, specialist from the Aisla Listening Centre, expert in the advanced management of highly complex cases at home; Federica Cerri, neurologist and ALS area representative of the Nemo Clinical Center in Milan, and Michela Coccia, physiatrist and clinical director of the Nemo Clinical Center in Ancona. The commission also includes experts in the field of psychology, such as Maria Lavezzi, director of psychologist at the palliative care network of the Valli Taro district and Ceno of the local health unit of Parma. The expert leads the Italian Group of ALS Psychologists (Gip-Sla) and offers high-level psychological support to families affected by the disease.
Vincenzo Silani, former full professor of Neurology at the University of Milan and director of the Neuroscience Department of the Irccs Auxologico of Milan, is present for scientific research. The specialist leads the ERN Euro-NMD expert group on motor neuron diseases, a European Union project for European Reference Networks (ERNs) which aim to provide highly specialized care and specific knowledge for complex and rare conditions. In Milan, the president of the Arisla Foundation Mario Melazzini will contribute his experience in managing funding and promoting research on ALS. From the regions of Southern Italy there are Antonella Toriello, ALS neurologist at the San Giovanni di Dio and Ruggi d'Aragona Hospital in Salerno and pioneer of the Day Hospital reception program dedicated to people with ALS, and finally Paolo Volanti, head physician and director scientific research of the FSM Presidia of Mistretta in Messina, a point of reference in the clinical management of ALS throughout Sicily.
“The creation of this scientific medical commission – underlines Sabatelli – represents a fundamental step in the fight against amyotrophic lateral sclerosis. I am honored to lead a group of highly qualified and passionate professionals who will share their knowledge and expertise to promote research, improve care and support people with ALS. Together, we will work to find innovative solutions and to guarantee complete and multidisciplinary care for people with ALS and their families”. In the inauguration session, the commission shared the 2024-2027 Program Plan. Priority among the topics addressed are: dissemination with scientific columns, the national ALS Biobank, telemonitoring, genetic testing, the virtual clinic for neurocognitive assessments and screening of the shared care plan, the Dysphagia project, the revision of the document on Law 219/2017 and the drafting of specific guidelines on ALS for emergencies/urgencies in the emergency department.
#Rare #diseases #Aisla #medicalscientific #commission #established
