La Fondazione LIRH onlus promuove ogni anno iniziative di informazione e divulgazione. Di seguito troverai elencate tutte le nostre iniziative.
4 Dicembre 2017 - Con il Premio, quest'anno alla sua I Edizione, la Fondazione intende valorizzare i ricercatori italiani che svolgono le migliori ricerche, cliniche o biologiche applicate, pubblicate o in corso di pubblicazione, su riviste scientifiche indicizzate.
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.
Two studies recently published reveal significant new insights into the understanding of Huntington's disease. The studies were conducted by different research groups, but share conclusions that point in the same direction. Therefore, 2025 begins with a strong acceleration of knowledge about Huntington's disease.
HUNTINGTON: The mutation modifies its length over time within neurons, and it is now possible to detect signs of biological changes many years before the onset of symptoms.
by Ferdinando Squitieri, MD, PhD
Two studies recently published reveal significant new insights into the understanding of Huntington's disease. The studies were conducted by different research groups, but share conclusions that point in the same direction. Therefore, 2025 begins with a strong acceleration of knowledge about Huntington's disease.
LIRH Foundation is proud to participate in a prestigious and ambitious scientific and cultural project about prevention of neurodegenerative disorders, including Huntington's disease.
“Preserving the Brain: A Call to Action” - part of the Human Brains project promoted by Fondazione Prada in 2018 - aims to focus on the importance of prevention and early treatment of widespread and still incurable diseases, such as Alzheimer’s, Huntington’s, Parkinson’s, Amyotrophic Lateral Sclerosis, and Multiple Sclerosis.
The full dossier was was sent to EMA by Prilenia at the end of July.
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".
Today, March 8, 2024, we are not only celebrating the international Women's Day, but also the birth of a new Association, named LIRH Friuli Venezia Giulia, thanks to a women, Annarita! The 'LIRH family' keeps growing.
Please, meet Annarita:
"My name is Annarita, 52 years old. I am a nurse. I have thirty years experience in the field of General Medicine. I currently work in Radiology, dealing with Magnetic Resonance Imaging and CT scans. I would describe myself as an empathetic person, with an expansive and "explosive" character.
In a recent community letter sent out on January 26, Prilenia Therapeutics announced that people who took part in the PROOF-HD phase three trial will be able to take pridopidine, the experimental drug administered as part of this study, thanks to a expanded access/compassionate use program (EAP/CUP).
An important study has led to the development of a cognitive assessment tool that could help predict the severity of Huntington disease (HD) in those close to onset.
Huntington disease (HD) - a condition that affects one’s movement, cognition, and behavior—manifests fully in adulthood.
GLUT-1, a protein that transports sugars into human tissue cells, is deficient in the brain and peripheral tissues of children with Huntington's disease, but not in adults.
Breakthrough in the study of Huntington's disease: an alteration in the pediatric HD is not present in the adult HD
Our brain consumes over a quarter of the energy needed to make our entire body function, translated into approximately 200-300 kilocalories per day. Without sugars, it would not be able to function properly and support very important functions such as the activity of neurons and the processing of information.
