Vistit to the IGBMC and Dynacure in Strassbourg

On March 24, 2016, members of  ZNM – Zusammen Stark e. V. and The Myotubular Trust met at IGBMC in Strasbourg to visit the laboratory of Jocelyn Laporte, where Myotubular Trust have been funding projects for a number of years. We had a tour of the IGBMC lab with Jocelyn Laporte, Belinda Cowling and Johann … Read more…

Film of the Myotubular Trust with German Subtitles

Here is the great film of the Myotubular Trust with German subtitles. It shows, that sponsoring research for a treatment for centronuclear myopathies in deed pays off. All this the Myotubular Trust made possible with donations! Thank you so much Myotubular Trust and donors! We co-operate closely together with our friends of the Myotubular Trust … Read more…

European Conference

On May 07. and 08., 2016 the European family conference on myotubular myopathy and other centronuclear myopathies takes place in Niedernhausen near Frankfurt, Germany. It is organized together by the Myotubular Trust and ZNM – Zusammen Stark! Information on the conference, the detailed program (incl workshops) and to the registration process you will find here.  … Read more…

Family Conference – Save-the-Date – May 7

  ZNM – Zusammen Stark! e. V. and the Myotubular Trust wil host the next family conference on myotubular myopathy and other centronuclear myopathies on May 07 in Germany near Frankfurt. More information you will find soon on our website: Family conference 2016. We hope that many of you can come!

Visit to Strassbourg

Today, October 21, Emil was invited to the IGBMC (Institut de génétique et de biologie moléculaire et cellulaire. We got to know the research group of Jocelyne Laporte and Johann Böhm and  explained how life is with myotubular myopathy. Holger reports about a normal day in Emil’s life       Most of those present … Read more…

EMA grants orphan designation to MTM-Treatment

The European Medicine Agency recently granted orphan designation* to the virus containing MTM1 for the gene therapy for x-linked  myotubular myopathy (XLMTM).  To read more about this designation, please go to the Website of the EMA. *A status assigned to a medicine intended for use against a rare condition. The medicine must fulfil certain criteria for designation as an orphan medicine … Read more…