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 was officially established at the beginning of this year. At the end of January, the board members of CUREUsher and the board of Stichting Ushersyndroom visited the Radboudumc to discuss cooperation between the two groups and to exchange information. CUREUsher will host the ‘Jo’s Scafell Pike Challenge’ in early April, with which they will raise money for Stichting Ushersyndroom for the pioneering research of Erwin van Wijk in the Radboudumc in Nijmegen.
Currently, major steps are being taken worldwide in scientific research into treatment for and unravelling Usher Syndrome. International cooperation between patient organizations, researchers and doctors is very important at this time. By working together, we can raise larger grants and funds for scientific research, researchers can share their knowledge and doctors can diagnose and map patients in the right way. International cooperation can also lead to smoother regulations within Europe, so that trials can be started earlier and medicines or treatments become cheaper for all patients.
CUREUsher, a patient-led organisation, was founded by Joanne White in the UK, with co-founders Deborah Heffernan and Carol Brill in Ireland. Their main objective is to raise funds and donations to go towards scientific research into the causes and treatment of Usher Syndrome for all patients worldwide. Joanne, Deborah and Carol hope with the establishment of the organisation it will give a strong message to the government and the care services in their countries to acknowledge deafblindness by Usher Syndrome, so that patients can gain better access to the right care and services.
Jo’s Scafell Pike Challenge
Joanne White, chairperson and founder of CUREUsher: “For the first time I hope for a remedy for Usher Syndrome. With a lot of courage, determination and positivity – I think we all have this power – there is a solution for Usher Syndrome.” Joanne wants to do the ‘Jo’s Scafell Pike Challenge’ together with you. A challenge to climb the highest mountain peak in The Lake District on the weekend from 5 to 7 April 2019 under the guidance of a guide. You can find more information about this challenge by clicking the link below. https://www.largeoutdoors.com/event/jos-scafell-pike-challenge/?fbclid=IwAR0H83Ef6c4paHmBB6KLhpnvHs5v8p7Y-ew36ncBQ04AWh43sMBP_hQIyc0
Joanne and her ‘Usher friends’ invite as many people as possible to join. All funds raised and sponsoring will be earmarked through Stichting Ushersyndroom and will benefit the promising research by Erwin van Wijk. Also enthusiastic people from the Netherlands are cordially invited to join this challenge in the Lake District!