Muscle diseases related to dysferlin are caused by a defect in the gene that’s responsible for the generation of dysferlin, a protein that plays a part in skeletal muscle repair. One type of dysferlin, miyoshi myopathy, is usually diagnosed when patients are in their late teens. Eventually, patients will need a walker or wheelchair.
 
Since the disease is considerably rare – in the Netherlands, less than twenty are known to suffer from miyoshi myopathy – Coenen feels it’s vital to bring together people from several countries and found an international organization. To prepare for leading the NPO, she’ll be using the Marina van Damme Grant for taking two courses on entrepreneurship, and attending a dysferlin conference in the US.