 | NYSTAGMUS ACTION GROUP |
Nystagmus is a form of visual impairment. It is an involuntary eye movement
which cannot be corrected by wearing spectacles or contact lenses. Accompanying
eye conditions such as short or long sightedness or astigmatism may be
corrected, enabling the sufferer to see more clearly. The Network is a self-help group run by people who are affected by
nystagmus. The Action Group was founded in 1984 by Vivien Jones whose son, Sam,
has nystagmus. Founder members had all experienced widespread ignorance about
nystagmus and decided to set up a self-help group to provide support and
information to all those affected. The group aims to promote awareness,
understanding and to encourage medical research into the condition. The Network is involved in the following activities: - Two guides have been written: Growing Up with Nystagmus for parents and
Living with Nystagmus for adults.
- Operation of Insight, a phone-in service for those living with or
interested in nystagmus.
- Focus is the quarterly newsletter keeping members updated regarding
research, equipment etc.
- An information card for school teachers has been produced which suggests
how they may assist pupils with nystagmus; also a pocket size ID card for
pupils.
- Nystagmus has been promoted through the media.
- Annual open days are held in London, with guest speakers (audio cassettes
available) and also at regional centres
- Equipment for therapy suitable for some nystagmus sufferers has been
purchased.
Please write for further information.
Nystagmus Action Group
C/O RNIB
Garrow House
190 Kensal Road
London
W10 5BT  020-8968 6161
 http://www.btinternet.com/~lynest/nystag01.htm
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