Program of the conference and the family meeting


Friday, June 05 2015, Astoria – Hotel in Göttingen
Time Speaker Affiliation Topic Download
2 pm
Dr. Esther von Richthofen Klinik für Unfallchirurgie und Orthopädie -Abteilung Orthopä­die, Universitätsmedizin Göttingen, Germany [in German] What consequences has scoliosis? What can be done to prevent it? PDF
2:45 pm Prof. Dr. med. Ulrike Schara/ Dr. med. Heike Trippe Neuropädiatrie, Entwicklungsneurologie und Sozialpädiatrie  Universitätsklinikum Essen, Germany
[in German] Possibilities for rating and for improvement of the clinical situation  of patients with MTM/CNM Presentation of the Pyridostigmine- Therapy PDF
3:30 pm
coffee break
4 pm
Dr. Laurent Servais/ Charlotte Lilien MD, PhD,  Institute of Myology, GH GH Pitié-Salpêtrière, Paris, France [in German] Status and curative perspectives of genetic therapy based on the aav treatment; presentation of the natural history study. PDF
4:45 pm
short coffee break
5 pm  Daniel Wisser respiration therapist
secretion management with children with tracheostoma and ventilation
6 pm Suyash Prasad M.D.,
Tristen Moors
Director Clinical Operations Audentes Therapeutics, USA [in English, with translation into German]  Information on the clinical trial on gene therapy; Recensus study
7 pm
End of presentations
8 pm
Dinner in the hotel
Saturday, June 06.2015, Astoria – Hotel in Göttingen
Time Speaker Affiliation Topic
8  am
10 am
Dr. Johann Böhm Pathophysiology of neuromuscular diseases,
translational medicine and neurogenetics, IGBMC, Frankreich
[in German] Genetic basics of  MTM for Non-Biologists. What is wrong? What function does  myotubularine have in muscles? PDF
11 pm
Start of the Family meeting
  joint afternoon(according to weather conditions we might have a small walk through the town or just meet in our big room in the hotel etc.),
8 pm
Sunday, June 07. Juni  Astoria – Hotel in Göttingen
9 am
 11 am