• Nystagmus is a serious form of visual impairment characterised by uncontrollable movements of the eyes, affecting focus and depth perception.
• At least 1 in 1,000 babies are born with nystagmus in the UK each year.
• People with nystagmus need help and support throughout their education, into employment and onwards into adult life.
The Nystagmus Network runs an Information and Support Line, provides free to download information documents, holds national and regional events and funds cutting edge research into diagnostics, potential treatments and, eventually, prevention and cure.
• Training for a further volunteer education advocate to support parents / carer
• Printing new stocks of leaflets to be distributed to newly diagnosed patients
• Support with applications for trust and grant funding for major projects
• Event sponsorship for our annual Open Day
• Setting up local and regional peer to peer support groups
• Volunteer group leaders for local nystagmus networks
• Leaflets distributed to hospitals and clinics
• New nystagmus research projects funded
How can you help?
• £50,000 could part fund a post doctoral research project
£850 could train a further education advocate
£15,000 would cover an annual Open Day and research workshop
• A volunteer manager to help recruit and train local leader
• Regional liaison volunteer networking with eye clinics
• A paralegal willing to specialise in SEND law and advocacy
• Customisable merchandise, especially sun hats or glasses
• Printed balloons for Nystagmus Awareness Day
• Child friendly craft materials or kits, paper, paints, etc
How we succeed
• 450 families accessed our support services in 2019
• 75 children supported in educational settings in 2019
• 1 in 1,000 of the general population affected by nystagmus signposted to our information
442 individuals/families receive personalised information and support 75 parents/carers are provided with bespoke education advice, improving quality of life
The Nystagmus Network is a registered charity in England and Wales, established in 1984. We provide support and information, raise awareness and fund research into nystagmus, a serious form of visual impairment affecting at least 1 in 1,000 people.