‘People make the Stichting Ushersyndroom’
The Ambassadors, the members of the Board, the members of the Advisory Board and the Medical Advisory Council all have a link with Usher Syndrome, because they suffer of Usher Syndrome themselves or because they are partner, child, parent or friend of an Usher. Everybody has his or her own story. This is what makes our foundation unique and distinguishes it from other charitable organisations.
The many ‘Friends of Usher’ organise national and regional creative campaigns or offer their knowledge and services as volunteers. The proceeds of the ‘Friends of Usher’ make up the major source of income of the foundation. They are the driving force!
The foundation consists of three Board members who each have their own knowledge and experience from a patient perspective and in administrative spheres.
- Ivonne Bressers (Chairwoman)
- Annouk van Nunen (Secretary)
- Ariella van Weerd-Ellenkamp (Treasurer)
MEDICAL ADVISORY COUNCIL
The members of the Medical Advisory Council give the Board advice with respect to project applications and make additions from a patient perspective to studies.
The Medical Advisory Council consists of the following people:
- Roland Thijs
- Emile Cossee
- Willem Quite
- Cindy Boer
The consultants of the Advisory Board support the Board in word and deed. The Advisory Board consists of the following members:
- Nico de Milliano
- Maarten Stikkelorum
- Stijn Belt
We are really proud of our Ambassadors Machteld Cossee and Joyce de Ruiter. You must have seen them on television of heard them on the radio. Machteld and Joyce both suffer from Usher Syndrome. Together they make the Stichting Ushersyndroom more widely known and they bring Usher Syndrome to the attention of many people. It would be nice if a Dutch celebrity could help them with this!