Collect funds and donations for stimulating scientific research on Usher Syndrome with main goals; better diagnosis, developing a treatment for Usher Syndrome and improve quality of life and wellbeing.
Ushersyndroom Foundation wants as charity organization with sparkling campaigns, to raise money with one major goal in mind: to stop the process of becoming deaf and blind. Developments in genetic testing and gene therapy now improve rapidly. The first positive results for people with Usher Syndrome are already recorded, also here in The Netherlands. These developments offer hope for a future treatment for people with Usher Syndrome.
Our ambition is to provide financial support, through fundraising and donations, to these scientific developments that aim to find treatment for the Usher Syndrome. It would be a great thing if young people with Usher Syndrome will not have to experience visual and hearing impairment. The adults with Usher Syndrome would also benefit from this treatment, as that would mean that they will not have to lose their remaining vision and hearing.
Better quality of life
The life quality of people with Usher Syndrome can become better. More funds are required for further research that would reduce the barriers in communication, information and mobility. Daily life with Usher Syndrome is very stressful due to the limited vision and hearing; the remaining vision can barely compensate for the hearing loss and the remaining hearing cannot compensate for the vision loss. As the sight and hearing deteriorate, so does the quality of life.
There are very few aids on the market that meet the criteria for use by people with a dual sensory impairment. People with Usher Syndrome do not always get the appropriate help, support and advice they need because laws and regulations, reimbursement of aids and the social care are mainly concentrated on either the visual or the hearing impairment. It remains difficult to take into account one unique disability that combines both hearing and visual impairments and which negatively reinforce each other, in other words 1 + 1 = 3.
More Usher awareness
It is not possible to collect donations and funds without also raising awareness for Usher Syndrome. Usher awareness means increasing society’s attention and understanding of Usher Syndrome. When people understand the impact of Usher Syndrome and what it means to slowly become deaf and blind in daily life, then the lives of people with Usher Syndrome can become a little easier. By providing this information we also bring people with Usher Syndrome in the picture and let them be seen.
1,000 people in the database for Usher Syndrome
Also, US has as mission to reach the estimated 1,000 people with Usher Syndrome in The Netherlands. It is very important that anyone with Usher Syndrome registers for the database that will be developed in Radboud University Nijmegen Medical Centre in Nijmegen, in order to develop more specialised knowledge about Usher Syndrome. People with Usher Syndrome can make an important contribution to the development of a treatment by registering on this database.
Read more about the database project.