I have committed myself as Secretary of the Board with a lot of dedication for the Stichting Ushersyndroom since the year 2016. Initially, I was driven by personal motivation. This is because I suffer from Usher Syndrome myself. As this is a hereditary disease, I do not want to burden my children with this ‘sword of Damocles’. I want to have a feeling that I have done everything that is in my power to find a treatment for this serious disease. You do not suffer from Usher Syndrome on your own. It also has a heavy impact on our family. My husband, children and I try to get the most of our lives despite Usher Syndrome. It is for a good reason that our children have made the song ‘Leef’ [Live] by Dré Hazes our family motto.
The developments in science go fast and as patient and member of the Board I can help to accelerate these developments. Usher Syndrome will be treatable and I will be there to witness this. I am convinced of that!