King Willem-Alexander has appointed Ivonne Bressers (57) a knight of the Order of Oranje-Nassau. As president of the Dutch Usher syndrome Foundation and the driving force behind it, she is of inestimable value to the Usher patient group. Mayor Marcouch presented the award during the “lintjesregen” at the City Hall in Arnhem.
Ivonne Bressers has Usher syndrome. Most people with this very rare disorder are born hearing impaired or deaf and experience progressive sight and hearing loss. There are 400,000 patients worldwide, including 1,000 in the Netherlands who suffer from Usher syndrome. There is currently no treatment to stop the process of becoming deaf and blind. Ivonne’s deepest wish is that in 2025 there will be a treatment for every Usher syndrome patient.
From 2009 to 2015, Ivonne volunteered tirelessly and unpaid for the interests of the deafblind patient group. She participates as a volunteer in various working groups of the Eye Association OOG & OOR and makes great strides. With her project group, she managed to ensure that the second cochlear implant (an implanted hearing prosthesis) for deafblind people is fully reimbursed by health insurers. She also initiated the establishment of a national expertise center for patients with Usher syndrome within the Radboudumc. Nowadays, these patients can come here with their specific care needs.
Usher syndrome Foundation
In 2015 Ivonne starts in the campaign team of the Dutch Usher syndrome Foundation and joins as general board member in 2016. In 2019, she is appointed president of the foundation. A task she performs with enthusiasm, dedication and vigor.
From its inception until now, Ivonne, together with the efforts of volunteers for the Foundation, has managed to raise more than 1.1 million euros. The funds received are used to finance very promising scientific research, both at home and abroad, into an effective treatment for people with Usher syndrome.
The Royal Decoration is an extra stimulus for Ivonne to keep working on fulfilling her deepest wish: “in 2025 Ushersyndrome will be treatable for everyone”.