Research into the natural development of Usher Syndrome is essential in the phase of therapeutic scientific developments. Many and detailed eyesight and hearing measurements are to be recorded in order to be able to measure the effectiveness of a future therapy. Only after studies have demonstrated the effectiveness of a
Source: ProQR Therapeutics Maartje living with Usher syndrome At a glance, it’s hard to tell Maartje de Kok – 41, married and mother of four – has Usher syndrome. Though she manages her life very well, it took her a long time to get to that point. “I have learned
Photo fltr: Carol Brill, Deborah Heffernan, Liesbeth Geerits, Ivonne Bressers, Joanne White, Ariella Ellenkamp Stichting Ushersyndroom have had close ties with Usher patients from Ireland and the UK for some years. Patients with Usher syndrome in Ireland and the UK have no central organisation specifically for those with the disease. CUREUsher
‘CRUSH USH’ The Central Committee on Research Involving Human Subjects (CCMO) has given the Usher Syndrome expertise centre in Radboud UMC permission to actually start the CRUSH study. The CCMO assesses whether medical scientific research complies with the legal stipulations. With this the CCMO guarantees the protection of participants of
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 the similarities? We will explain below. CRUSH has been aligned to RUSH2aAlso thanks to
USHIE, our mascot with black sunglasses and headset, is hot! USHIE is the symbol of all people who cannot hear and see well because of Usher Syndrome. The mascot was launched while developing the infographics for a campaign held one year ago. Now we see USHIE more and more often.
The story of George Kabel is the story of victory and defeat. It takes you into the world of the blind artist George Kabel (1955) from Eindhoven. The documentary is about giving new meaning to your life. At first George loses his sight and then he’s turning completely deaf. We
During the 7 Hills Run in Nijmegen, the Netherlands, Joshua Cheptegei broke a world record, but the fifth edition of Run4Usher was a record-breaker too! Last weekend, 110 runners appeared at the start of the 7 Hills Run. People suffering from Usher Syndrome and their families and friends took up