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The HD Awareness Month campaign “I give you my word” ended successfully.

But awareness and knowledge on Huntington Disease must be strenghtened all year round.

Huntington, the campaign “I give you my word” ends successfully

The national awareness campaign on Huntington’s disease “I give you my word”, which we promoted throughout Italy from May to mid-June, ended with great participation. A widespread mobilization, including public events, cultural activities and online campaigns, has turned the spotlight on this rare, neurodegenerative, hereditary genetic disease that is still little known, but which directly involves thousands of Italian families.

The initiative brought together family associations, third sector organizations, universities and public institutions, with the aim of informing, sharing and creating bonds. Among the cities involved, Perugia gave a symbolic start to the campaign by lighting up the Torre degli Sciri, the Fontana Maggiore, the Grifo and the Leone in purple. On social media, hundreds of people participated in the digital initiative by sharing words that describe the Huntington’s experience: fear, loneliness, uncertainty, but also strength and participation

The campaign has reached many significant milestones: on May 20 in Rome, in the Sala Nassirya of the Senate, the book “Suspended Lives – A Journey Between Fragility and Strength” was presented, with the participation of the Hon. Marcello Gemmato and Senator Filippo Melchiorre. The book was then also presented in Bari, on May 28, together with Councilor Micaela Paparella and Councilor Elisabetta Vaccarella.

Also in May, on the 30th, the conference “Never Alone Again. Networks of Hope for Huntington’s” took place in Cagliari, in collaboration with the University of Cagliari, LIRH Sardinia and the Fondazione Sardegna. On May 30th and 31st in Torre a Mare (BA), the cherries of solidarity filled the square thanks to the commitment of LIRH Puglia.

On June 7th, in Rome, Villa Borghese hosted the first edition of the “Run for Hun”, a 5 km solidarity run-walk promoted with Life4Huntington, ACSI and Radio Radio, with the patronage of the Municipality of Rome. On June 8th, again in Torre a Mare, the volunteers participated in SpazzApnea, a national waste collection day on the coast.

On June 14, Lecce hosted a conference entitled “From the Ballo di San Vito to the Taranta. Faces and stereotypes of Huntington’s disease”, organized with the Accademia Leonina Papa Leone XXIII, while on June 15, in Sardara (SU), 100 guitars played together in an evening of solidarity music.

The symbolic closing of the campaign took place in Perugia with the participation of LIRH Umbria at the Inclusion Fest and the Avanti Tutta Days, from June 20 to 22: two events dedicated to inclusion, health and solidarity.

“This campaign,” says Barbara D’Alessio, President of LIRH, “has been a great collective exercise in listening and visibility. The words we have collected tell us about a living community that wants to emerge from invisibility. Strength and participation have become the symbol of a network that does not give up, and that every day builds bridges between patients, families, doctors, researchers and institutions. But we cannot stop here: awareness must be cultivated all year round.”

A campaign in line with the awareness initiatives that have taken place throughout the world in this same period on Huntington’s disease and, through the LIRH Foundation, connect Italy to the global community” comments Ferdinando Squitieri, Scientific Director and co-founder of LIRH and Director of the Huntington’s Unit of the IRCCS Casa Sollievo della Sofferenza.

Thanks to this intense mobilization, Huntington's disease has found new spaces in the public debate, but the path to truly emerge from the shadows is still long. The hope is that the words shared in these weeks will become actions, listening and concrete policies.

In the framework of the initiatives promoted during the month of awareness on Huntington's disease, scientific information has played a central role, thanks to the voice and authoritative presence of Prof. Ferdinando Squitieri, neurologist, Scientific Director of the Italian Huntington Research League, among the leading experts at an international level.

"It is more than appropriate to emphasize that every medical intervention must be personalized and must take into account not only the current well-being, but also the future well-being of each individual affected by Huntington's disease. I therefore hope that our campaign has also reached healthcare professionals, because it is necessary to strengthen the culture of good clinical practice - as well as scientific research - in the treatment of Huntington's disease" - said Prof. Squitieri.