Lega Italiana Ricerca Huntington continues to grow: LIRH Umbria is born!
Last August 13, 2024, Lega Italiana Ricerca Huntington (LIRH) Umbria Association was officially born, on the initiative of a group of family members.
"Perugia, 13 August 2024 - LIRH Umbria was officially born today. It all started from the desire to help and support HD affected individuals and their families. With our personal experience, we want to be, in our territory, the guide that is missing among doctors, hospitals and bureaucracy. We want to be the thread that unites us with the LIRH Foundation and with prof. Ferdinando Squitieri, for years alongside families with Huntington's disease who, together with his staff, support all of us as a researcher and as a physician".
These are the words of Michela Bracalenti, co-founder and new elected President of the LIRH Umbria Association in whose family Huntington's disease has passed through at least three generations - her childhood memories go back to her paternal grandmother - for whom the same thing has always been repeated identical script, 'until we got to the LIRH Foundation'.
Michela is a combative and very determined woman, tired of continuing to accept the arrogance of those who, completely lacking in competence, present themselves as experts and treat patients and their families with condescension and superficiality.
Together with her, on the Board of Directors, there are other people who share her experience and objectives.
"The setting up of another Association that openly recognizes itself in our values and our commitment - after LIRH Toscana, LIRH Puglia, LIRH Sardinia, LIRH Friuli Venezia Giulia and NOI Huntington - and wishes to be part of our 'family' fills us with pride and prove us that we have chosen the right name, 'Lega', for our Foundation. From the beginning, in fact, we wanted to underline the concept of binding (uniting) the families affected by Huntington's disease with each other. and with the world of clinical research because only if we 'move' together can we make a difference." - states Barbara D'Alessio, President of the LIRH Foundation.
Anyone who lives in Umbria and wants to contact the Association's management can write to umbria@lirh.it