The Kolping Family Smečno, Sirius Foundation, University of South Bohemia in České Budějovice, Faculty of Health and Social Studies, 2nd Faculty of Medicine, Charles University in Prague, Motol University Hospital, Department of Children’s Neurology under the patronage of Vice County Marshal of South Bohemia Ivana Stráská hold a
Conference MULTIDISCIPLINARY CARE FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY
16th – 18th September 2011 FHSS USB in České Budějovice URAN, Boreckého 27
Preparatory Committee: Helena Kočová Dana Kováčová Dagmar Světlíková Dr. Miluše Havlová, M.D. Dana Šišková, M.D. Jana Haberlová, M.D., Ph.D. Markéta Vlčková Marie Chlopčíková
Preliminary conference program Dr. Miluše Havlová, M.D. Conference guaranty Friday 16th September 2011 8:30 – 9:00 Presentation of conference participants Lecture Hall E, 2nd floor 9:00 Commencement ceremony of the conference 9.15 Neuromuscular diseases, SMA a Dystrophy Chairperson: Dr. Miluše Havlová, M.D. Dana Šišková, M.D., Thomayer University Hospital in Prague - Krč Neuromuscular diseases Jana Haberlová, M.D., Ph.D., Motol University Hospital Spinal muscular atrophy, different kinds of dystrophy Petr Vondráček, M.D., Ph.D., Brno University Hospital Research and new methods of curing SMA 10.30 Coffee break 11.00 Genetics of neuromuscular diseases, Spinal muscular atrophy Pre-implant and prenatal diagnostics Dr. Luise Simard, M.D., University of Manitoba, Canada Dr. Taťána Maříková, M.D. 12.00 Respiratory care for patients with SMA Patients on lung ventilation and home care Iva Příhodová, M.D. 1st Faculty of Medicine, Charles University in Prague, Kateřinská Unviersity Hospital David Kemlink, M.D., Ph.D., 1st Faculty of Medicine, Charles University in Prague, Kateřinská Unviersity Hospital 13.00 Lunch and break 14.00 TREAT-NMD and international consensus on care standards [TBC] 14.30 Nutrition of patients with SMA Eva Choceňská, Thomayer University Hospital in Krč 15.00 Good sitting positions in the wheelchair
Lida Vašíčková, M.D., Paracentrum Fénix 15.30 Orthopedical aids in patients with SMA Petr Krawczyk, M.D.
16.00 Surgery of patients with neuromuscular diseases Martin Repko, M.D., Brno University Hospital, Orthopedic clinic 16.30 Compensatory aids 16.50 Rehabilitation of children patients
Saturday 17th September 2011 9.00 Consistent rehabilitation Integration/inclusion of children with neuromuscular diseases Jiří Jankovský, M.A., Ph.D., Arpida CB and FHSS USB Consistent rehabilitation Vanda Hájková, M.A., Ph.D, Pedagogical Faculty, Charles University in Prague, Integration/Inclusion of children with disability Blanka Bartošová, M.A. Experience of Centre of Special Pedagogy with integration of children with neuromuscular disease 10.30 Coffee break 11.00 Pre-school and school integration Aids for pedagogy education Helena Kočová Specifications of education of children with disability in early and preschool age Markéta Vlčková Integration without fun and games 12.30 Lunch break
13.30 11.00 Social counseling Daniela Jeníčková, Special Pedagogy Centre Štíbrova, Prague
14.00 Ergo therapy 16.00 ARPIDA Children Centre– excursion /swimming possibility? / Music therapy Dana Pšeničková, music therapist Arpida CB Sunday 18th September 2011
10.00 Bazilika /IGY/ Benefit show for children Play Já to jsem Víťa Marčík jnr. (It’s me, Vita Marcik, Jr.) During the conference there will be present sales representatives of companies that make compensatory aids for children with disabilities. Children will have program including canis therapy, ergo therapy, music therapy, creative workshops and group work with the help of assistants. For children on lung ventilation there will be skilled personnel available.
