Overview on our association

We have created a new poster with the important facts of our association. Take a look! Since our foundation in June 2015 until February 2019, the number of members has risen sharply from 28 to 133 people. We represent people from Germany, the Netherlands and Austria. More than two-thirds of our members have a MTM1 … Read more…

First promising results from gene therapy

On January 4, 2018 Audentes Therapeutics has published first data on the first three patients in the clinical trial on gene therapy on myotubular myopathy, called ASPIRO. This study has begun in September 2018. The presentation on these preliminary results is on the first three of in total 12 patients. These first three pateints received … Read more…

Research Grant for Jim Dowling

Today (26.10.2017) is this year’s research grant from the Myotubular Trust and ZNM – Zusammen Stark! e.V. officially been awarded: Jim Dowling of the Sick Kids Hospital in Toronto receives € 244,000 to investigate the efficacy of several promising drugs that could greatly reduce the muscle weakness of patients with myotubular myopathy. Jim Dowling and … Read more…

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…

Application for research grants now open!

The Myotubular Trust has just opened the call for research projects on centronuclear myopathies. All information (incl. the application forms) can be found on its website. This Seventh Call For Projects will require completed applications by 1700 hours GMT Wednesday 30th November 2016. The awards will be given by May / June 2017. Before, the … 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!