Seminar: Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) and Education

10 - 12 known diagnoses will lead to very early onset of dementia. Juvenile Neuronal Ceroid Lipofuscinosis (JNCL), also named as “Spielmeyer-Vogt sykdom” in the Nordic countries, is one of these diagnoses.

 

There have been very few studies of non-medical interventions for individuals with JNCL. Studies on education and JNCL is almost non-existing. Very early onset of dementia is further an unknown area in education. These were the main causes behind the research project JNCL and Education project (2014 - 2017) where Norway, Denmark, Finland, Germany, Scotland, England and USA participated. The main sponsor of the project is Erasmus+ (EU).

 

The seminar will include presentations of some core findings from the project followed by questions and a debate. The conclusions from the seminar will be included in the final project report. The main theme for the seminar is:

 

How can Education and other non-medical service providers ensure best possible education, learning and development for learners with JNCL? 

Date: Monday May 29th from 10.00 to 15.00 hrs
Deadline: 01.05.2017
Target group: The target groups of the seminar are authorities within Education, Health service sector, and representatives from higher education/peer organisations in the Nordic countries.
Venue: Statped midt, Søbstadveien 65, 7088 Heimdal, Trondheim
Fee: Free
Registration deadline for this event has expired.

The neuronal ceroid lipofuscinoses (NCL) is a group of inherited, progressive neuro-degenerative diseases. The juvenile form (JNCL) is caused by mutations in the CLN3 gene. It is characterized by severe visual impairment with onset around age 4–8 years, with a developmental course that includes dementia, blindness, epilepsy, speech problems, motor coordination problems and possible emotional reactions including anxiety and depression. One to two children with JNCL are born in Norway every year. There is no cure and the disease leads to premature death.


The project results show the importance of learning and education to promote best possible development and learning for individuals with JNCL. However, some of the educational innovations, that will be addressed in the seminar, are unknown areas for education today.


Presenters in the seminar are Professor Stephen von Tetzchner (University of Oslo), Professor/Doctor of medicine Alfried Kohlschütter (University Medical Centre in Hamburg), Senior Researcher Per Kristian Haugen (Norwegian National Unit for Ageing and Health), and representatives from Statped midt and the Norwegian NCL Family Association.

The seminar language is English.

Hotel
Participants of the seminar is given a special room rate at Quality Hotel Panorama in Trondheim (NOK 865 for a single room and NOK 1071 for a double room with breakfast). You have to make your own hotel reservation. The location of the hotel is about 4 km from the seminar site and 7 km from the city centre.  

Important:
• Use the following code if you want to stay at Quality Hotel Panorama and make use of the special rate: 4805
• The special room rate is available to 1st May 2017 but only if there are room vacancies
• Hotel reservation can be made by phone (+47 72500900) or mail q.panorama@choice.no.
• Hotel address: Ivar Lykkes vei 1, 7075 Tiller, Norway

Transport between Quality Hotel Panorama and the seminar site (Statped midt)
The seminar organiser, Statped midt, will provide you with free transport between Quality Hotel Panorama and the seminar site. Further information about the transport will follow to participants staying at this hotel.  

Transport from Trondheim City to Quality Hotel Panorama
• Bus: Use bus 46 from Trondheim City, Central Station or Munkegaten. Go to bus stop “City Syd” (about 200 meters from the hotel)
• Taxi: You can either use “Norgestaxi” (phone number +47 08000) or Trøndertaxi (phone number +47 07373)

Bus from Trondheim City to the seminar site (Statped midt, Heimdal)
• Take bus 4 Heimdal from City Centre (for instance from the street «Munkegata», bus stop «M2») to bus stop «Skytterveien” just outside the location of Statped midt. The bus transport takes approximately 30 minutes.
• Please note the following: Bus 4A Heimdal is not passing the location of Statped midt

Contact information

Contact Bengt Elmerskog for further information Bengt.Elmerskog@statped.no

 

Additional information

The seminar is free of charges including lunch and coffee breaks. It is possible to apply for a travel allowance:

Euro 100 for Norwegian participants outside Sør-Trøndelag

Euro 200 for Nordic participants outside Norway.  

The number of travel allowances are limited. Please contact Bengt Elmerskog for further information

Phone: +47 93222457

E-mail: Bengt.Elmerskog@statped.no