Entries by Ivonne Bressers

What would you do with one million euros?

By Nico de Milliano, Chairman of the Advisory Board of Stichting Ushersyndroom [Dutch Usher syndrome Foundation] Stichting Ushersyndroom will soon reach a wonderful milestone: the first million will be brought […]

New research: testing gene therapy

With extra large vectors on mini retinas  Stichting Ushersyndroom [ Dutch Usher Syndrome Foundation] is funding the majority of the new research “Genetic drugs preventing blindness due to loss of […]

Minigenes USH2A: General status

By Erwin van Wijk, lead researcher Radboudumc Errors in the code of the USH2A gene explain the development of Usher syndrome in about 50% of all patients. In addition to […]

Breaking the silence

Jo Milne had lived a whole life, severely hearing impaired from birth. Just before she turned thirty, Jo was diagnosed with Usher Syndrome, a rare genetic and progressive condition that […]

Two generations on the big screen

Living with Usher and at the same time wanting to be a role model for others On the International Usher Awareness Day 2021, the documentary Stilte in de Nacht [Silence in the […]

Colour me blind – Usher Awareness Day 2021

Singer-songwriter Jasper Steverlinck sings about Usher syndrome Flemish singer-songwriter Jasper Steverlinck released a song in 2018 that he wrote in response to a friend’s personal story. Her son had been […]

Swim at night and take a nap during the day

Zebrafishes suffering from USH2A have a disturbed sleep rhythm Are patients suffering from Usher Syndrome so tired because of the huge efforts made in connection with their poor hearing and […]

A view on the RUSH2a study

In the international RUSH2a study of Jacque Duncan MD, University of California, San Francisco, 120 patients spread over nine different clinics are monitored for four years. This study includes only […]