In 2016 the fourth European Family Conference for Myotubular and Centronuclear Myopathy was organised by members from Zusammen Stark!, the German organisation for centronuclear and myotubular myopathy, among them Jen and Holger Fischer, together with the Myotubular Trust.
The conference was attended by 45 families, from 12 countries and 16 researchers from Germany, France, Holland, UK, US and Canada. You can read about the event below.
Sadly, Holger and Jen’s son Emil, diagnosed with myotubular myopathy, passed away shortly after the conference ended.
This coming weekend, on Sunday 19 February, Emil would have been three years old. Jen and Holger will be celebrating Emil’s life by planting sunflowers and they would like you to join them.
If you can, wherever you are in the world, please plant a sunflower seed and in the summer, the flowers will remind the world of Emil.