• FOR AND BY ‘USHERS’

    This is what makes our foundation unique!

IVONNE BRESSERS

Late in the year 2014, I heard for the first time that physicians and researchers were doing research into Usher Syndrome in the Netherlands. The idea that (indeed) research was done into a treatment for Usher was such a strong motivation for me, that I together with other fellow sufferers set up our first campaigns to make Usher more widely known and to raise funds. I initially learned the basics from these pioneers and my ambitions grew. My ability for strategic thinking leads to thinking big. My deepest wish to find a solution for Usher keeps feeding my confidence. And the continuous flow of creative solutions and ideas gives me really a lot of satisfaction and energy. I want to be there when a treatment will be found for Usher Syndrome in the year 2025!

I suffer from Usher Syndrome myself. My two grown-up daughters know perfectly well which challenges I have to deal with every day again.


ANNOUK VAN NUNEN

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!


ARIELLA VAN WEERD-ELLENKAMP

Being in my twenties, as I will be able to say for another couple of years, I am the youngest member of the Board. I am personally involved with Usher Syndrome. The Usher of my mother and her perseverance have inspired me to commit myself to the Stichting Ushersyndroom. I am married and I live in Hellendoorn (the Netherlands). As a young person and with my experience in accountancy I hope that I can bring in another perspective in order to, together with everyone who will commit him- or herself to Usher Syndrome, reach our goal: A treatment for Usher in 2025!