08:55 – A reminder; Why we are here
// Knut Rötne, Norway
09:15 –Most interesting news from The International NCL Conference 2025 in Australia
// Jonathan Cooper, Ineka Whiteman & Angela Schulz, USA, Australia and Germany
10:00 – Coffee Break
10:30 – Overview of current NCL treatments
// Ineka Whiteman, Australia (virtual presentation)
11:00 – Research update from Norway, Sweden and Denmark
//Ingrid Helland, Niklas Darin & Mette Handrup, Norway, Sweden & Denmark
11:45 –Group Picture
12:00 – Lunch
After lunch
13:00 – Latest update on NCL laboratory research
// Jonathan Cooper, USA
13:45 – Illuminating a Cure:
Bridging High-Content Imaging and In Vivo Models to Accelerate Therapies for Batten Disease
// Diego L. Medina, Italy
14:15 – Real food for real people – always!
// Line Lindhardt Pedersen, Denmark
14:30 – Coffee break
15:00 – Acetyl Leucine (NALL)
// Michael Strupp, Germany (virtual)
15:30 – Old and new perspectives on CLN3 disease
// Sara Mole, United Kingdom
16:00 – Short break with a smoothie
16:10 – University of Rochester Batten Center
// Heather Adams, USA
16:40 – Novel CLN8 Mouse Model recapitulates Major Hallmarks of the Neuronal Ceroid Lipofuscinoses
// Reetta Hinttala, Finland
16:55 – Wrap up of the day
17:00 – 2-hour break
19:00 – Two-course dinner followed by dessert and relaxed socialising at the bar
Before lunch
08:20 – A reminder why we are here: Childhood dementia
// Mette Behnke, Denmark
08:35 –Acceptance of Childhood Dementia as a concept – a path paved with cobblestones // John R. Ostergaard, Denmark
09:05 –Psychosocial aspects of Childhood Dementia
// Colin Reilly, Sweden
09:35 – Energy and support to everyday life with JNCL
// Justiina Salmela, Lilli Hinds & Timo Tulisalo, Finland
10:05 – Coffee Break
10:30 – Understanding key components in communication about a progressive disease in Children
// Yvonne Kruithof, NL
10:50 – Using model systems to identity therapeutic target
// Tom Wishart, United Kingdom
11:15 – Targeting PLA2G15 in lysosomal diseases
// Vincent Blomen, The Netherlands
11:45 – Batten-1 (miglustat liquid formulation) clinical development program: Status and next steps //Marie Sebille, France
12:00 –Lunch
After lunch
12:45 – Disease modelling and preclinical testing in CLN3 patient derived organiods
// Magnar Bjørås, Synnøve Algrøy Fjeldstad, Maria Camara-Quilez & Jørn-Ove Schjølberg, Norway
13:30 – Latest update from UKE
// Angela Schulz, Germany
14:00 – Short Coffee Break
14:20 – CLN-301 AAV Gene Therapy Clinical Updates and Next Steps
// Kathrin Meyer, USA (Virtual)
14:50 – Zebronkysen and Beyond: Developing ASO Medicines for CLN3 Batten Disease
// Michelle Hastings (Virtual), USA & Yael Shiloh-Malawsky, USA
15:20 – Key take aways from the Nordic NCL Conference
// Jonathan Cooper, USA
15:35 – Final evaluation
// Gisela Caesar & Mette Behnke, Sweden & Denmark
