6th October World Cerebral Palsy Day: the Importance of Scientific Research and the European AINCP Project for children with Cerebral Palsy
Milan, 2 October 2023 - Every hour, a child is born in the world with a possible disability of cerebral palsy (CP). This condition knows no geographical boundaries, representing the most widespread disability in childhood, with an estimate of 1.6 cases per 1,000 live births, over 10,000 new cases every year. This condition can be the unpredictable result of complications during childbirth, genetic factors or underlying conditions, the causes of which are still often unknown today.
Despite its diffusion, cerebral palsy is still perceived as a rare condition today but there are 17 million people who live with it all over the world: therefore, a condition that is not rare but neglected. However, it is important to note that many people with a cerebral palsy disability learn from childhood to acquire adaptive skills, thus increasing their chances of living independently as adults. In some cases, a high level of assistance is necessary, while for many others today it is possible to support themselves financially and lead an independent and satisfying life, also thanks to the growing role of technology in breaking down the disabling barriers of the living context: for this reason, it is It is important to intervene with early diagnosis and treatment.
World Cerebral Palsy Day
World Cerebral Palsy Day, celebrated on October 6, provides a unique opportunity to better understand this neurological condition through the testimonies of people with cerebral palsy, their families and support organizations. This day is a time to raise awareness to ensure that people with CP enjoy the same rights and opportunities as every citizen, and also to learn about the significant advances in the medical and scientific fields that allow not only early diagnosis, but also timely treatment right from the start, with the aim of improving their quality of life.
Precisely in this perspective, on the 6th of October, the European AINCP project, one of the most relevant research projects in the field of Artificial Intelligence and Cerebral Palsy, begins the process of recruiting children with unilateral cerebral palsy to the project, starting from Italy, but soon also in Spain, Belgium and Georgia. To participate, simply register on the website www.aincp.eu. Furthermore, in collaboration with researchers, clinicians and families, online and offline events will be held on 6 and 7 October, dedicated to Italian families, children and young people with cerebral palsy and to all citizens.
Learn about Cerebral Palsy
Cerebral Palsy is a condition that in Italy concerns approximately 100,000 people, including adults and children, while globally it is estimated to involve approximately 17 millions of individuals. The diagnosis of Cerebral Palsy often comes late. This condition can have a significant economic impact, typical of permanent disabilities. However, barring other serious complications, people with CP have a similar life expectancy to that of the general population. Cerebral Palsy is the result of damage to the central nervous system that can occur during intrauterine life, at the time of birth or shortly thereafter. This condition manifests itself with a wide range of symptoms, but motor disability is the most noticeable feature. The motor impact can take different forms, such as hemiplegia (involvement of half the body), diplegia (involvement of the lower limbs) or tetraplegia (involvement of all four limbs), depending on the body district affected.
Children with CP need a personalized and intensive rehabilitation program, to be started early and based on a detailed assessment of their functional abilities, a scenario that is not always realistic in Italy.
FightTheStroke with the valuable support of AINCP has recently published “Ictus perinatale e pediatrico, manuale per le famiglie”, the Italian localisation of the International Alliance for Paediatric Stroke toolkit (IAPS), which can be downloaded for free here. In its original conception, it is intended as a roadmap for any parent of a child with CP from birth to adolescence. We say “localisation”, not simply translation, because the Italian IAPS toolkit contains reference to available resources in Italy, local regulations (e.g. regarding schools), hospitals, communities, in addition to research updates, and worldwide organisations. As such, the Italian IAPS toolkit has been realised with the help of a wide range of Italian professionals and parents, including children’s own experience.
AINCP
The European AINCP project aims to answer the questions of children with cerebral palsy and their families, representing one of the largest European research projects aimed at validating new artificial intelligence algorithms for functional diagnosis and personalized tele-rehabilitation of children with unilateral cerebral palsy.
This project aims to combine expertise from the clinic and technology fields to develop new, ethically and economically sustainable approaches in the management of cerebral palsy. A concrete example is the creation of functional assessment tools that are more advanced than the scales currently in use, which will allow doctors to obtain a more complete view of children's limitations in daily life and to personalize rehabilitation programs based on their specific needs.
A notable aspect is that this is the first scientific project in which the FightTheStroke Foundation has participated since the planning phase. This foundation represents the main support group in Italy for parents of children with cerebral palsy and plays a fundamental role in listening to and representing the needs of families to co-create personalized solutions for children.
World Awareness Day
With the aim of creating greater awareness about cerebral palsy, often underestimated in the investments of scientific research and in media narratives, and to promote non-discrimination of every person, the FightTheStroke Foundation together with clinicians and researchers from AINCP, promotes the "Fight and Smile" initiative, a calendar of events accessible to all.
On October 6, the day will be dedicated to online information sessions, which include conversations between doctors and parents, the presentation of artificial intelligence projects related to cerebral palsy and discussions on rehabilitation and the use of assistive devices for people with disabilities.
On October 7, the event will move offline with music and digital photography workshops at the Apple Store in Piazza Liberty 1 in Milan. In the afternoon there will also be the opportunity to try adapted sports and e-sports disciplines at the PlayMore! sports center in Via Moscova 26 in Milan, demonstrating how sport in all its forms can be a means of inclusion and health promotion.
The initiative is included in the international events calendar 'World CP Day 2023'.
We invite everyone to participate in this World Day, to celebrate these values together and which, in the logic of co-design, sees doctors at the forefront in wanting to better understand the needs of patients and wanting them to be actively involved in scientific research.
WORLD CEREBRAL PALSY DAY INITIATIVES:
To find out about the program and enroll