ZNM – Zusammen Stark! e. V. announces co-operation with RYR1-foundation

ZNM – Zusammen Stark! e. V. and  the RYR-1 Foundation (Pittsburgh, PA, USA) are excited to announce a collaboration to further strengthen their shared interest in helping those with certain forms of congenital muscle disease. Thanks to our donors, ZNM- Zusammen Stark! e. V.  could recently donate 8,000 Euros to the RYR-1 Foundation, with those funds … 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…

Newsletter published

Ab jetzt kann der aktuelle Newsletter, die Ausgabe 3 von 2017, von unserer Seite heruntergeladen werden! Wir berichten über die vielen Aktivitäten im Verein, von unserer Familienkonferenz, von den neuesten Ergebnissen aus der Forschung und wie wir dank unserer Spenderinnen und Spender zum ersten Mal einen wesentlichen Beitrag zur Forschung leisten konnten! Und natürlich stellen … Read more…

Forschungsstipendium an Jim Dowling

Heute (26.10.2017) ist das diesjährige Forschungsstipendium des Myotubular Trust und von ZNM – Zusammen Stark! offiziell vergeben worden: Jim Dowling vom Sick Kids Hospital in Toronto erhält 244.000 € zur Erforschung der Wirksamkeit von mehreren vielversprechenden Medikamenten, die die Muskelschwäche von Patienten mit myotubulärer Myopathie sehr stark lindern könnte. Jim Dowling und sein Team haben … Read more…

Clinical trial for gene therapy has begun!

This week Audentes Therapeutics has announced that the first patient in the USA has been dosed with AT132. Thus the clinical trial for gene therapy has begun. A very important mile stone has been reached. We are very happy and excited about this. It was worth it that parents world wide did not simply accept … Read more…

20,000 € for the research grants of the Myotubular Trust

We are very happy that on May 5, 2017 the members’ assembly of ZNM – Zusammen Stark! has decided to continue the support for the research grants of the Myotubular Trust.  After 10,000 € a year ago and 15,000 € in January 2017 this time we increased the sum again by 5,000 €. The next … 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…

Family Meeting 2017

The Annual General Meeting and Family Conference of the association CNM – Together Strong! e.V. will take place from May, 5th to 7th in Tambach, Thuringia-Germany. This time, the conference will be only in German language. Here you can find information about the program and application form. We are looking forward to seeing you again! … Read more…

ZNM – Newsletter 2016 is now available – also in English!

Now, you can download our latest newsletter with reports on the conference in May, our fundraising success, latest research news, he short film on CNM/MTM we made and much more! Check out the English version here. More documents  on our association (newsletters, flyers, etc.) you can find in the download section of our homepage!           … Read more…