MUS Foundation (Me Usher Syndrome) will be called Usher Syndrome Foundation as from 1 March 2016. Apart from a name change, a change in the board took place as well. Last 18 April, the people most closely involved celebrated the informal transfer in Utrecht.
In 2013, an actively involved family Belt in Breda, the Netherlands, founded the MUS Foundation following the example of the American sister organisation The Coalition for Usher Syndrome. The campaign team Ushersyndroom.nl was added in October 2014 as a section that would actively acquire funds and donations for stimulating research. Because of the very rapid growth and exposure of Ushersyndroom.nl, the moment has now come to move on with a new board, one website and a new name.
The objective of the Usher Syndrome Foundation is to promote the interests of all people suffering from Usher Syndrome and their social environments. By working together in a network organisation, we want to make Usher Syndrome more widely known and acquire means to improve the quality of the lives of people suffering from Usher Syndrome. Within the Usher Syndrome Foundation the Campaign Team is working on familiarity and raising funds and donations. The Usher Syndrome Foundation is supported by Friends of Usher. The Friends of Usher assist the committee and the campaign team with advice, scientific knowledge, networking and familiarity. In order to safeguard the promotion of interests and the contact between fellow sufferers, the Foundation wants to closely cooperate with the Usher Syndrome Contact Group within the Oogvereniging.
• We acquire donors and funds for scientific research into prevention, recovery or treatment of Usher Syndrome.
• The User Syndrome Foundation wants to make Usher Syndrome more widely known by establishing a knowledge platform. We want to inform people and their social environments, making sure that all knowledge available can broadly circulate through the network.
• At the international level we aim at setting up a European and international Usher Syndrome network.
People suffering from Usher Syndrome slowly become both deaf and blind. Seeing and hearing are both necessary for processing information coming from the surroundings. With Usher Syndrome there is less or even no sound and/or vision to observe. What is not heard, can also not be seen and the other way around. When people become both deaf and blind these impediments mutually strengthen each other and eventually the world does not stretch any further than just the hand.
Usher awareness stands for more attention for and understanding of Usher Syndrome in society. If people better understand the impact that slowly becoming both deaf and blind has on daily life, this will make the lives of people suffering from Usher Syndrome a bit easier. With our information we give the people suffering from Usher Syndrome a face. We will pay attention to this on the International Usher Awareness Day held every third Saturday of September. This year, the Usher Awareness Day will be held on 17 September.
Usher Syndrome Foundation
P.O. Box 15746
1001 NE Amsterdam
Read here more about the new organisation.