General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Image 1

Click here to download the Paper

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. JNCL is used in this paper.

Developmental patterns of JNCL in relation to principles for pedagogical interventions are discussed in this paper. It is believed that pedagogical interventions can contribute to an improved quality of life for individuals with JNCL.

This paper is a co-operative venture between Statped Heimdal 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.

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease