Blog

In Germany alone, it is estimated that approximately 300,000 people live with a muscle disease, also known as muscular atrophy. For most of those affected, the muscle weakness develops over the course of life. 
In some children, the symptoms appear immediately after birth or in the first few months. These children have a congenital muscle disease and are usually more severely affected and depend on aids at a very early age. Their life expectancy is often limited.
Majes muscle disease also shapes their everyday life and life experience.
On our BLOG we will regularly provide you with relevant MighytMaje-News. Here you can inform yourself about the progress of the development of a gene therapy for Maje, but also get to know e.g. other families of muscle diseased children.

Learn about our everyday life with the disease, about our worries and fears, but also about newly gained life perspectives, about courage and visions. And about the hope that connects us all.

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Grant application rejected

Grant application rejected

If you have a disease that occurs more frequently, the chances are good that drugs already exist or are (want…
At the Charité in Berlin

At the Charité in Berlin

In July we were allowed to visit the wonderful team around Prof. Dr. Spuler in Berlin and get an insight…
Family Lindblad

Family Lindblad

Family Lindblad was my first contact with another CMD family. Hjalmar is 4 years old and has motivated the family…