Brickless Centre Tuesday, 8 September Theme: Myotonic dystrophy

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