The international project EpiThe4FSHD was presented on Friday, May 20 in Lignano Sabbiadoro at the Bella Italia Village. The project leader is the research group of the San Raffaele Institute in Milan coordinated/directed by Davide Gabellini.

The presentation took place within the program of the UILDM National Events, a three -day annual meeting during which the association’s main activities are presented. An important opportunity to involve and update members and friends of UILDM. UILDM National Events were held in presence after two years of pandemic and involved about 300 participants.

The presentation of Epi took place during the panel focused on national and international projects in which UILDM is a partner or leader. The meeting was moderated by UILDM Fundraising and project management office, while the project was presented by Davide Gabellini: after illustrating the partnership, he explained the objectives of the project for testing the safety and effectiveness of a pharmacological approach to FSHD. «In this first phase – Gabellini explained – a drug is being tested on cells in the laboratory while in the second phase we will pass to test the drug on an animal model». He also recalled the role of UILDM that will manage the communication, publicity and dissemination of the project, and spread knowledge on the pathology subject of the research.

 

In addition Fabiola Bertinotti , the international representative of UILDM for FSHD, spoke at the meeting to make available her skills to involve the association within the project. Fabiola Bertinotti, expert in marketing and corporate communication, talked about the way she found the association, how she met Dr Gabellini and Facio-scapular-humeral dystrophy (FSHD).

The speech of Marco Rasconi, president of the association, emphasized how such projects are fundamental in order to continue to give a hope of better life to the people living with FSHD.