The meeting organised in collaboration with LIRH Lega Italiana Ricerca Huntington is part of the program ‘Preserving the Brain: A Call to Action’ and includes a series of free guided tours as well as a meeting at the Godard cinema.
PROGRAM
2.45 – 4PM / 3.30 – 4.45PM
Guided tours of the exhibition ‘Preserving the Brain: A Call to Action’ led by experts and introduced by Fondazione Prada and LIRH association staff.
17 – 19.30
Meeting at Cinema Godard “Huntington’s disease. A journey through the generations, between prediction, prevention and stereotypes”
Moderator: Laura Berti, journalist at RAI.
SESSION 1| PATIENTS, CAREGIVERS, FAMILY MEMBERS AT RISK
An account of those living with Huntington’s disease and the fear of inheriting it. Young people. The rare disease context and the role of associations.
Rare neurological diseases and the commitment of the LIRH Foundation
Speaker: Barbara D’Alessio, President of the LIRH Foundation.
How life changes after a genetic test; witnessing the relentless evolution of the disease in parent, sibling, child; explaining things that are difficult to talk about even within the family; the difficulty of being taken care of.
Stories by Andrea, Annarita, Daniela, Osvaldo, Francesco.
SESSION 2 | RESEARCHERS AND CLINICIANS
The voice of those who study the disease to make it “the most curable of incurable diseases”
Huntington’s as a model: the challenges of treatment and research
Speaker: Ferdinando Squitieri, Scientific Director Fondazione LIRH, Head of the Huntington and Rare Diseases Unit IRCCS Casa Sollievo della Sofferenza.
Psychiatric factors (from depression to suicidal tendencies)
Speaker: Alberto Salmoiraghi, Medical Director MHLD BCUHB/Visiting Professor Wrexham Glyndŵr University, Galles.
Growing up in a Huntington family
Speaker: Sabrina Maffi, Huntington and Rare Diseases Unit IRCCS Casa Sollievo della Sofferenza.
Huntington’s and observational research
Speaker: Selene Capodarca, Global Study Director Enroll-HD, European Huntington Disease Network.
Huntington’s and therapeutic research
Speech by Lorenzo Cottini, CEO Evidenze Health srl, Head of the Working Group on Clinical Trials, AFI- Associazione Farmaceutici dell’Industria.