People suffering from Usher Syndrome dream about timely development of a treatment for stopping the process of becoming both deaf and blind. Usher Syndrome cannot be solved by just one study or breakthrough. Therefore support our projects and make the hopeful research into a treatment for Usher Syndrome possible.
Children with Usher syndrome type 2 are born with a hearing loss and develop the first symptoms of deteriorating vision around puberty. In addition to an increasingly narrow field of vision, some may also have a (significant) increase in hearing loss.
So far, one Usher gene is known to cause Usher Syndrome type 3, being USH3A. This type, which is very rare in the Netherlands, is more progressive, so here the loss of hearing as well as the loss of eyesight can go very fast.
Apart from deterioration of hearing and eyesight, people suffering from Usher Syndrome more often have health problems. It is still unclear whether this is a consequence of Usher Syndrome or that Usher Syndrome is caused by this. The quality of life can be improved by means of proper support and aids, but there are also treatments that possibly can relieve or mitigate associated problems.
Thanks to all donated funds, Stichting Ushersyndroom has already been able to finance three research projects. The study ‘Mini-genes USH 2a’ has been completed by now. We expect that the results of this will soon be published. The follow-up study ‘Mini-genes USH 2c’ has just been started. The ‘CRUSH study’, a natural development study, is in full swing.
By now, 10 genes are known to be responsible for Usher Syndrome. A lot of different mutations of each Usher gene are known. Mutations are changes in the DNA all of which result in improper (or insufficient) production of the Usher protein. The many mutations and the huge size of most Usher genes make research into a treatment for Usher Syndrome really complicated.
An application for (co-)financing of (research) projects is to be submitted to the Board of the Stichting Ushersyndroom, which will assess the application following a fixed procedure and, if in line with the strategic objectives and resources of the Foundation, fully or partly allocate the application.
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