President: Dr. Holger Fischer
My name is Holger Fischer. With my wife Jennifer Bilbao I live in Stuttgart. Our son Emil was born on February 19 2014. He was brought to an intensive care unit immediately after birth. Three month later, after a muscle biopsy we got to know that Emil’s condition was called “myotubular myopathy”. After this diagnosis we felt sad and lonely. However, just days after, we found information on the Myotubular Trust and the very promising research that was funded by the trust. The foundation of our association is the attempt to establish a network for the families in Central Europe, to spread hope and information and last not least to collect money to fund research on a cure for myotubular and other centronuclear myopathies. Very sadly, Emil died om May 8 2016 when we were just on our way back from our family conference. However, he is still with us in our hearts and shall encourage everyone to help the other people with CNM. You can see and read about some of Emil’s adventures in his blog: http://emil-augustin.blogspot.de/
Vice President: Mareen Bockstette
My name is Mareen and I am Morice’s mom. Together with my husband Uwe we live in Hannover. Morice has myotubular myopathy, he was born on 15.02.2016.
When Morice received his diagnosis, 9 months after he was born, we did not really know what that meant. Only when we got to know this association (CNM Together Strong e.V.) through our pediatrician, we got answers. We are very grateful for this association. Now, I would like to give back my knowledge to the members of our association and increase the awareness for this disease. I would also like to pass on the knowledge that I gained as a nurse over the years. It is very important to me that people outside the association also learn about our lives.
Treasurer: Frank Schulte
My name ist Frank Schulte and with my wife Meike, we have 2 sons: Finn Luca, born 14.07.2004 and Michel Mika, Born 26.02.2007 – and one daughter, who was born in 2015.
I’m working for the “Deutsche Hypo” Bank in Hannover as a consultant for internal control.
When Michel was 20 months old we received the at first devastating diagnosis DNM2 related centronuclear myopathy. This really brought our family together. The phrase ” I wish you good health” has gained a new status for us.
In my free time, I like to play soccer and go running.
“It´s not about giving life more days, but the days more life!”