The RUSH2a and the CRUSH studies
By now, both the RUSH2a and the CRUSH studies have been started in the Usher Syndrome Expertise Centre in Radboud UMC in Nijmegen, the Netherlands. What are the differences and […]
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If you slowly become become deaf and blind
Slowly become both deaf and blind. It is hard to imagine. Still, this is reality for people suffering from Usher Syndrome. Usher Syndrome, actually what type of disorder is this? […]
How is Machteld Cossee doing today?
In 2014 ‘The small world of Machteld Cossee’ made by director Hetty Nietsch had its première at the Dutch Film Festival. Six months later it was broadcast on television in […]
CRUSH study and database for unraveling Usher Syndrome
Stichting Ushersyndroom will finance the start of the CRUSH study, a natural development study into Usher Syndrome. With this the basis can be laid for future trials. Patients can, with […]
Patient and physician jointly take the first step towards treatment of deafblindness
Stichting Ushersyndroom finances CRUSH study The expertise centre for Usher Syndrome in Radboudumc in Nijmegen (the Netherlands) will start a natural development study into Usher Syndrome. This is a very […]
Run in pace, following a pacer
Out of the 35,000 participants of the 7 Hills Run held on 19 November, 144 people run in the Run4Usher team. This team consists of people with a poor eyesight […]
‘I do not see myself as a person with restrictions. I am just Jeff.’
‘I do not see myself as a person with restrictions. I am just Jeff.’ He is deaf and will become blind as well. Jeff Horsten (23) from Waspik wrote a […]
‘Sheer happiness’: Liesbeth is becoming blind and deaf and wants to keep seeing her children
Liesbeth Beekhuis (35) suffers from Usher Syndrome and will slowly but surely become both deaf and blind. In ‘Sheer Happiness’ she is surprised with precious memories that she can save […]
Deaf and almost blind Jeff moves and inspires with song
He was born deaf. And he will become blind as well. Jeff Horsten sings a self-written song about his restrictions on YouTube. The 23 years old man from Waspik, the […]
Stichting Ushersyndroom finances restart of ‘minigenes’
Stichting Ushersyndroom makes available an amount of €35,000 to Radboud UMC for the restart of the ‘minigenes’ study in connection with Usher Syndrome. This involves the study which gives hope to […]