Brickless Centre Tuesday, 8 September Theme: Myotonic dystrophy – management Language: English Moderator: Ulla Werlauff 09.00 – 09.25 Welcome and introduction by Jes Rahbek, MD, director RCFM Presentation of RCFM’s DM1 population, epidemiology 09.25 – 10.25 Myotonic dystrophy – overview from congenital to adult (Bruno Eymard – France) 10.25 – 10.55 Cognitive function, tests (Anne-Berit Ekstrøm – Sweden) 10.55 – 11.15 Coffee break 11.15 – 11.30 The experience of living with myotonic dystrophy (Arvid Heiberg – Norway) 11.30 – 11.50 Cardiac symptoms (Helle Petri – Denmark) 11.50-12.10 Respiratory symptoms (Ole Nørregaard – Denmark) 12.15-13.15 Lunch 13.15 – 13.35 Families with DM 1 – filmed interviews with patients and families living with DM1 (Asger Frost, Annette Mahoney – Denmark) 13.35 – 14.25 Rehabilitation management (Kateri Raymond – Canada) 14.30 – 16.15 Interactive sessions Session 1: Medical management, care program (Moderator: Bjørn Lindvall – Sverige,Ole Gredal - Denmark) Session 2: Social management/education and job (Moderator: Kateri Raymond – Canada, Asger Frost - Denmark) Session 3: Physical assessments and rehabilitation (Moderator: Marie Kierkegaard – Sweden, Ulla Werlauff, Denmark) 16.30 – 17.15 Plenary session Summary of interactive sessions + panel discussion (Chair: Jørgen Jeppesen – Denmark) 19.00 Dinner Brickless Centre Wednesday, 9 September Language: English/Skandinavisk Moderator: Ulla Werlauff 08.30 – 09.00 Scandinavian consensus programs (SMA, DMD, DM1?) – status. (Ulla Werlauff, RCFM) 09.00 – 10.15 Presentation of projects and posters Poster: The usefulness of the instrument Occupational Self Assessment (OSA) in Myotonic Dystrophy Type 1 Ulrika Edofsson, Sahlgrenska Universitetshospital, Sweden Poster: Possible gender difference in weakness progression in myotonic dystrophy type 1 Elisabet Hammarén, Neuromuskulært Centrum, Sahlgrenska, Sweden Poster: Patient workshops as a method to identify, monitor and teach about symptoms in patients with juvenile onset DM1. Bente Kristensen, RCFM, Denmark Project presentation: An Investigation of Dystrophia Myotonicas effect on intelligence and quality of life. How to improve rehabilitation and thereby the patient’s life? Gitte Valentin Østergaard Sørensen, Muskelsvindfonden, Denmark Project presentation: Utvärdering av handortosbehandling för pojkar med Duchennes muskeldystrofi Johanna Weichbrodt and Britt-Marie Eriksson, Drottning Silvias barn-och ungdomssjukhus, Regionhabiliteringen, Göteborg 10.15 – 10.30 Coffee break 10.30 – 11.30 Presentation of projects and posters, continued Project presentation: PUST - e-learning program for everybody - about challenges and how to live a good life with Long Term Mechanical Ventilation (LTMV) Irene Lund, Nevromuskulært Kompetansesenter, Norway Project presentation: To live with ALS Petter Holmberg, Karolinska Institut, Sweden Project presentation: 2- and 6-minute walk test for patients with neuromuscular diseases Linda Kahr Andersen and Kirsten Lykke Knak, Rigshospitalet, Denmark Project presentation: Social implications of Myasthenia Gravis in Denmark Asger Frost, RCFM, Denmark 11.30 – 11.45 Summary of meeting and date for next Brickless Centre. (Jes Rahbek, RCFM) 11.45 Sandwich and goodbye