Help us help others
Whether you’re into marathon running, the three peaks challenge, tough mudder, cake baking or raffling, every pound you raise for Nystagmus Network is put to good use.
- NN does not receive any income from the Government or public sector and so relies almost entirely on fundraising and donations from our members. We use this money to achieve our three stated aims: to support people who have nystagmus to increase understanding of nystagmus through our annual awareness raising day and other activities and to encourage and finance research.
We have very low overheads. Our staff members work from home, so we have almost no office costs. All the money you donate goes directly towards helping people with nystagmus, raising awareness and funding research.
What does Nystagmus Network do with the money we raise?
Your money enables us to fund research, provide support to anyone affected by nystagmus and raise awareness of this little understood eye condition.
In recent years the Nystagmus Network has invested in scientific and medical research in universities and hospitals in Cardiff, Leicester, London, Plymouth and Southampton to develop more advanced diagnostic tests and investigate potential therapies.
We have funded international research workshops, bringing together the foremost experts from around the world, organised a medical training event and published a book: “The Challenge of Nystagmus”.
We are extending our email and phone support, updating our publications and producing a video to bring awareness of nystagmus to a whole new audience.
What we would like to do (when we have the funding)
We would like to help fund a major multi-centre research project into finding out whether it is possible to prevent nystagmus developing in new-born infants. Several of our research partners believe prevention may be possible. The total cost of the project is hard to estimate, but would probably be upwards of £200,000.
What our medical associates say:
Dr Jonathan Erichsen: "As the Director of the Research Unit for Nystagmus (RUN) here at Cardiff University, I wanted to express our sincere gratitude to everyone at the Nystagmus Network, including its members, whose generous donation has made it possible for us to purchase a state-of-the-art eye movement recording system, the Tobii X120. In addition to the fact that we are now in a position to measure non-invasively how people view simple and complex scenes, the acquisition of the Tobii system allows us, for the first time, to investigate the eye movements of even very young children with nystagmus. This should enable us, in the future, to document the actual development of nystagmus at an early age and its effect on children's vision in a variety of environments."
Comments from delegates at the 2013 international research workshop include: "I thought it was a beautifully organised event, and it was clear everyone attending found it stimulating and rewarding. Let us hope that further research and many collaborations arise from it: I certainly have had several new ideas as a result.”
“Many thanks for hosting such a wonderful event. I think everybody took a lot away from the conference. It was 3 brilliant days where I believe everybody, especially myself, learnt a lot about the field of nystagmus. It is obvious that nystagmus research is going places and that not only do we have such amazing experts with years of experience behind them but also that we have a young and enthusiastic group to take it to the next level.”
Nystagmus Network’s next international research workshop takes place in 2017.