2017 Tambach

Family meeting and conference for children and adults with myotubular myopathy and other centronuclear myopathies
in Tambach (Thür.) 2017

Foto with all participants 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.

More information on the meeting of members is available in German here. (Jahresbericht, Wahlergebnis, Protokoll).

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].

The program as book (incl. short stories on the families) can be downloaded here.

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.