Family meeting and conference for children and adults with myotubular myopathy and other centronuclear myopathies
in Tambach (Thür.) 2017
From June 05. 07 2017 we had our family conference in the village of Tambach in Thuringia. 27 Families were present.
On May 05 we had our meeting of members. At this event, the members of ZNM decided to transfer 20,000 € to the research grants of the Myotubular Trust.
In the morning of the next day we had presentations to several topics. An overview with links to the pdfs can be found here [German].
In the afternoon there were workshops on topics like secretion management, Galileo vibration plate, clinical studies, self-determined life and fundraising. There members informed, counseled and helped each other
In the evening we let balloons fly with good wishes.