F60 Noi-huntington – the hd youth project supported by LIRH foundation. (September 2018)

• Record Type: Journal Article
• Authors: D'Alessio, Barbara; Migliore, Simone; Migliore, Alessia
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 89(2018)Supplement 1
• Page Start: A61
• Page End: A61
• Publication Date: 2018-09
• Subjects: Juvenile Huntington Disease -- youth network -- communication -- networking.; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2018-EHDN.161
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: Many young people from the 700+ families served by LIRH reported a profound sense of isolation due to the fact that they do not feel like talking about their condition with friends, neither with teachers or with the boyfriend/girlfriend. Objective: Setting up a national youth network to offer to children and young adults (no matter if they are affected or at-risk) the opportunity to know each other, to meet and talk with no shame and no fear and to develop HD educational programs. Methods: Identification of the target (13 to 35 years old people); identification of a 'funding group'– choice of a 'group leader'; communication and networking. Results: First Sept-2017 funding group was made up by 8 people. The second meeting in March 2018 was attended by 15 people. The network counts at present >30 people from 8 out of 20 Italian regions. The presentation video had more than 14.000 views in less than 10 days. A FB page, an Instagram Page and a Youtube Channel were launched. Conclusions: Noi Huntington is the name that the funding group chosed to underline the need and the sense of belonging to the same community: NOI means WE. It is about to launch its own website and is planning several educational initiatives. This is a positive example of empowerment in the HD youth community.