FAST Global Highlight - Italy
FAST Italy was formed after some informal meetings with several parents who believed in science. We founded an organization called “Il Sorriso Angelman” which translates to “The Angelman Smile,” but we already had in mind to be part of FAST USA. We wanted to give families HOPE by funding research and accelerating a treatment for Angelman syndrome. We wanted to be part of FAST Global because we realized we needed to join forces in order to do this. AS is a rare condition and we strongly believed we needed to work on a global basis to find better scientists and better resources. FAST USA was giving hope to families. Something that no one ever did before.
In 2017, Benedetta Sirtori and Barbara Magno attended their first FAST Science Summit & Gala and had the first contact with the FAST USA Board. In 2019, we formally became FAST Italy!
Our first goal was to educate families. There was not much culture around science for Angelman syndrome in Italy. No one knew anything. We translated a lot of material (English being a strong barrier for Italian people, even these days) and our very first project was the translation in Italian of the Global Angelman Syndrome Registry (GASR), led by FAST Australia. We thought it was important to scientists and pharma to know where the patients are and what they look like. The translation could not go live at the beginning for technical reasons but eventually we have the translation and now, we encourage families to subscribe to the GASR because we want to be active in the Search & Rescue plan led by FAST.
Presently our big project is the biorepository which is up and running in Milan and we are ready to give samples to researchers who need and want to study AS mechanisms.
FAST Italy contributes to FAST Global with the creation of the first AS Biorepository in Italy and Europe. We want to help whoever is interested in studying the syndrome and we are eager to collaborate with other AS organizations. We also want to be an active part of the Search & Rescue project because we believe it is crucial for our patients to provide the scientists and pharmaceutical companies with accurate information on the syndrome for every age and genotype so that we can get to a treatment as soon as possible.
-FAST ITALY
Augusto Maggi (Chairperson and Founder) | Maria del Corno (Vice Chair and Founder) | Benedetta Sirtori (Treasurer, FAST Global representative and Science expert, Founder) | Barbara Magno (relation with AS families, in charge of the website and Founder) | Roberto Cattalano (Fundraising and Founder) | Emauela Tellaroli (Fundraising)