Management Board

Chairman of the Management Board
Holger Fischer

My name is Holger Fischer. I live in Stuttgart with my wife Jennifer Bilbao. Our sweet Emil was born here on February 19, 2014. He had to be taken to the intensive care unit of the Olga Hospital immediately after birth. It was only after a muscle biopsy in May that we knew Emil was suffering from myotubular myopathy (MTM). After being diagnosed with such a serious and rare disease, we were very sad and felt very lonely. But we soon found information about the Myotubular Trust in England and the many promising research results made possible by financial support from the Myotubular Trust .

The founding of our association ZNM – Zusammen Stark! is an attempt to connect families in Germany, to give them hope for a cure for their children and, of course, to raise money for the researchers! Sadly, Emil died on May 8, 2016 on the way back from our conference. But he lives on in our hearts! A few of the many experiences from Emil’s eventful life can be found in his blog: emil-augustin.blogspot.de
I am delighted that so many people are involved in our association. We really are all #TogetherStrong!

Deputy Chairwoman of the Executive Board
Mareen Bockstette

My name is Mareen and I am Morice’s mom. We live in Hanover together with my husband Uwe. Morice has myotubular myopathy, he was born on 15.02.2016. When Morice received his diagnosis at 9 months, we didn’t really know what it meant. It was only when our pediatrician drew our attention to ZNM-Zusammen Stark e.V. that we got answers.

We are very grateful to the association. And I would now like to give something back to our association by passing on information and raising our profile.

I would also like to pass on the knowledge that I have gained as a care professional over the years. It is very important to me that people outside the association also find out about us.

Treasurer
Frank Schulte

My name is Frank Schulte and I was born on 26.03.1973. I have two sons with my wife Meike. Finn Luca was born on 14.07.2004 and Michel Mika on 26.02.2007. Our daughter Ida Lotta was born on 23.10.2015. I work at Nord/LB in Hanover, where I am responsible for service provider management in the bank.

After about 20 months, we received a devastating diagnosis of DNM2 centronuclear myopathy for our Michel. That brought our little family closer together. It has also made us think differently about life at times. The phrase “I wish you good health” has taken on a new meaning. In my free time, I like to play soccer and go jogging.

“Don’t try to give your life more days, try to give your days more life!”