'Spazio Huntington' is an initiative with two main purposes:
1) help families affected by the disease to recognize and communicate the possible genetic risk to younger people;
2) allow a competent and discreet observation, outside of a hospital setting, by specialists experts in Huntington's disease and neurological and neuropsychiatric disorders in children.
We want, on the one hand, to reassure parents about doubts related to symptoms sometimes present in children with genetic risk of Huntington's disease, but not necessarily related to the disease (symptoms that can appear in any child's or pre-teenager's life: attention deficit, behavior disorder, language or movement disorders); on the other hand, we are willing to monitor dubious clinical conditions by favoring targeted medical interventions, also through innovative experimental therapies, when it is possible. In this sense, "Spazio Huntington" is a unique and cutting edge initiative, straddling communication, assistance and research.
Since July 2019, the headquarters of our Foundation host children and young people with Huntington's disease risk, together with their parents, who meet and do what they would normally do on any other informal meeting occasion: getting to know each other, interacting, playing. With the help of LIRH staff, during the meeting specialists of both Huntington's disease and pediatric neurological diseases, observe the children present. The experts, always with extreme discretion and 'care' , only when they deem it necessary, they can undergo medical examinations on the minors, given the parent's consent.
The LIRH Foundation has involved two excellences in this initiative: the IRCCS Casa Sollievo della Sofferenza / CSS-Mendel - guided by Ferdinando Squitieri, researcher and neurologist among the top international experts in Huntington and the IRCCS Pediatric Hospital Bambino Gesù - guided by Alessandro Capuano, researcher and neurologist expert in pediatric movement disorders and their respective teams.
It is the first time that children are observed, at the same time, by two of the highest experties, which integrate and complement each other, in a project totally dedicated to improving the knowledge of the pediatric Huntington's disease. This initiative could have implications in the treatment of pediatric Huntington's disease at a global level.
The initiative is operational, at the moment, every Friday afternoon once a month and the appointments are coordinated through our toll-free number : 800.388.330.
We are aware that the therapeutic trials that are currently targeting only symptomatic adults, will soon be available also for young patients who are affected by Huntington's disease. Although rare, pediatric Huntington's disease is a reality that deserves the same attention as that of adults and to which we must guarantee the the same hope of cure. For this reason, LIRH is constantly fighting against all forms of discrimination against those who are more fragile: the pediatric's disease cases represent, without any doubt, the most fragile segment.
Our ultimate goal is to give even the little ones the opportunity to access a cure and to do so, we need to get in touch with them, break down the wall of fear behind which the parents are hiding and getting to know their children and being able to follow them. To participate in "Spazio Huntington" is not necessary that the child manifests symptoms of illness.
We therefore invite anyone that intends to store hope in the future care prospects, to place trust in our initiative, by calling our toll-free number 800.388.330 for more information and book an appointment.