Management Board

Our Association        Family Stories

 

 

 President: Dr. Holger Fischer

IMG-20150324-WA0016My 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: Tracy Ulmer

 10781462046149882My Name is Tracy Ulmer and I´m the the mother of Camilo, who was born on 1st of May 2014. Camilo has  MTM.

Our association means a lot to me. First it brings families and individuals together and draws attention to centronuclear myopathies. Then it gives us the opportunity to give cnm specific Information and help and of course to support research.

 

 

Treasurer: Frank Schulte

IMG_0794My name ist Frank Schulte and I´m 42 years old. Me and my wife Meike have 2 sons: Finn Luca, born 14.07.2004 and Michel Mika, Born 26.02.2007 – and we are very excited about the birth of our daughter in October of this year.

 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!”