Aspects of Learning for Individuals with JNCL or CLN 3 Disease
This paper addresses some findings and experiences from The Juvenile Neuronal Ceroid Lipofuscinosis and Education Project (2014–2017). Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) is also called CLN3 disease, Spielmeyer-Vogt Syndrome and Batten Disease.
Developmental patterns of JNCL in relation to principles for pedagogical interventions are discussed.
It is believed that pedagogical interventions can contribute to an improved quality of life for individuals with JNCL.
The paper is a co-operative venture between Statped in Norway, University of Oslo in Norway, The Norwegian NCL Family Organisation, The Danish NCL Family Organisation, The Vision Center Refsnæs in Denmark, The Bildungszentrum für Blinde Sehbehinderte Hamburg in Germany, The Batten Disease Family Association in UK, The WESC Foundation in England, The Royal Blind Asylum and School, Edinburgh in Scotland, NCL-Gruppe Deutschland in Germany, The Valteri Centre for Learning and Consulting, Onerva in Finland and The Finnish Federation of the Visually Impaired.
In Norwegian / På norsk
Denne artikkelen tar for seg funn og erfaringer fra prosjektet Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) and Education (2014–2017). JNCL kalles også CLN3 sykdom, Spielmeyer-Vogt syndrom og Batten Disease.
Symptomer og sykdomsforløp hos JNCL blir beskrevet og sett i sammenheng med pedagogiske intervensjoner.
Det blir argumentert for at pedagogisk intervensjon vil kunne bidra til økt livskvalitet for mennesker med JNCL.