People often ask us to help with applications or appeals for DLA (Disability Living Allowance). We’re happy to help in various ways. For example, we can provide a supporting letter or put you in contact with experts on DLA appeals. Many people with nystagmus – including children – can claim some DLA, although often not without a struggle. So, we’ve recently added some tips to help you fill in the DLA application form.
Forum members
Added 10th January 2010
We’ve started 2010 by purging our online forum of inactive users, largely because many are would-be spammers. Most regular forum members will still be able to log on. If you can’t, please accept our apologies and register again. The best way to avoid future purges is to add the occasional post to the forum.
Focus 85 Newsletter, December 2009
Added 20th December 2009
“Hi, I’m Luke and I have nystagmus. I don’t really like P.E. at school because it’s mostly ball games. I can’t see the ball very well and no-one passes it to me because I will drop it, so I’m not that good at team games. That’s why I like skateboarding.” That’s probably not something many parents expect very young children with nystagmus to be writing when they reach their teens. But in our experience, Luke’s story is far from exceptional and is just one of the items in the latest issue of Focus.
You can also read about how Sana is getting on at university, about bullying and about one mother’s resentment towards her local eye clinic. Plus a report with photos on our 2009 Open Day and of course the latest Tale of Northwick.
Focus is available in print, audio and electronic format and goes to all member of NN.
Star Wars Sequel
Added 24th November 2009
Geoff Harmer, director of the highly successful film "Overtime - Star Wars Parody", is making a new film. Geoff made "Overtime" (see it at http://www.youtube.com/watch?v=TmG3oJykYnQ) in aid of the Nystagmus Network Charity as his son has nystagmus. We'll keep you posted about the sequel.
Added 7th November 2009
This issue of our 16 page Focus newsletter leads with the outcomes of September's international research workshop on nystagmus -- drug treatment trials, surgery options, genetics progress, modelling and measuring nystagmus. The performing arts loom large with articles about two young people with nystagmus who are treading the boards and the first ever stage adaptation of a Northwick story. Also -- sporting success in the USA and advice on Disability Living Allowance (DLA). Focus is sent to all NN members and is available in print, audio and electronic versions.
NN appoints new development manager
Added 26th October 2009
NN has appointed John Sanders as its UK development manager. As NN’s only employee John, who has nystagmus himself, will be providing information and emotional support by phone and email. He will also be giving talks about nystagmus, its effects and the latest developments in research and treatment.
NN chair Kathy Williams said: “John takes over at a very positive time for the Network. We recently celebrated our 25th birthday, held our second international research workshop and became BCLA (British Contact Lens Association) charity of the year. As a volunteer, John supported the NN committee in achieving these goals and I know he will ensure that NN continues to thrive in his new role.”
John said: “I have nystagmus, so I know from personal experience how it affects people both in practical and emotional terms. From the support I’ve had through the Nystagmus Network, I also realise how much we can do to help people overcome the serious challenges presented by nystagmus.”
During the 1990s John worked for the Reuters news agency before becoming a freelance journalist in 1998. He has been an NN committee member or volunteer for more than 20 years. John also sits on two ethics committees and volunteers with the RNIB, Cardiff Institute for the Blind and UCAN Productions, the not for profit theatre company working with young visually impaired people.
John is based in Cardiff, but has already travelled to or is scheduled to visit Birmingham, Chester, Gwent, Hereford, London, Plymouth, St Ives (Cambs) and Wokingham in his new role supporting people affected by nystagmus.
An uplifting 25th birthday party
Added 13th October 2009
The Nystagmus Network celebrated its 25the birthday on October 3, 2009, so we turned our annual Open Day into a bit of a party with cake, cards and balloons.
What was the best part of the day? Well, here’s what some of you told us:
“The future. Hearing from the next generation. Very uplifting to hear how successful these young people have been. It gives great hope for our own child as he grows into an adult.”
“Discussion groups. Q&A session with the experts.”
“Being able to meet others with nystagmus and being able to discuss and give/receive advice on nystagmus related issues.”
And the worst part?
Well, with 150 people in such a small venue, it was inevitably the queue for lunch. Lunch itself was great, but next year we will find a bigger venue. Nonetheless, we are grateful to the RNIB for the use of Judd Street and for all the help and support their staff gave us.
So what happened on the day? Discussion groups – Education and employment are big concerns for anyone with nystagmus, so we devoted time to those topics in the morning. We also ran a session for parents of newly diagnosed children to help them through this highly confusing and emotional process. And we had relaxation therapy to help reduce the physical stress sometimes caused by nystagmus related head posture.
Research and treatment -- Five experts answered a barrage of challenging questions. Neurologist Barry Seemungall explained how difficult it can be to work out the optimum dosage of drugs such as gabapentin. Ophthalmologists Jay Self and Eva Gajdosova handled questions on genetics, surgery and diagnosis. Optometrist Debbie Wiggins demonstrated the impact of stress and advised on how to maximise vision with contact lenses and glasses. Vision scientist Frank Proudlock updated us on the many nystagmus projects – ranging from drugs to surgery and reading – in Leicester University.
We also heard how thinking is developing on albinism, which almost always goes hand in hand with nystagmus. Researchers now suspect that albinism may be much more complex than previously thought and may exist in very subtle variations.
Young people -- Staff and volunteers from the charity LOOK worked with more than 20 young people printing T-shirts and making a video about the Right to Read campaign. LOOK National Officer Vicky Smith: “I’m really happy with the way things went. It might have looked like organised chaos, but everyone had a great time.”
Finally a comment from a father and daughter who were there: “I just wanted to let you know that it was an event that we very much enjoyed. The highlight for us was listening to people's experiences, especially those of the Young Set (Sam, James, Jonathan and Louise) - a great bunch of people.”
BCLA names Nystagmus Network charity of the year
Added 26th September 2009
The BCLA (British Contact Lens Association) has chosen the Nystagmus Network (NN) as its charity of the year for 2009/10. Among other benefits, NN will enjoy free attendance at BCLA conferences, free publicity in mailings to BCLA members and an article in the BCLA newsletter.
BCLA Secretary General Vivien Freeman commented: ‘We are delighted to support Nystagmus Network in this way and would encourage our members to get involved.’
NN honorary chair Kathy Williams said: “We are delighted to be BCLA charity of the year, especially in the year when NN is celebrating its 25th anniversary. This special link with the BCLA will help NN to raise awareness of nystagmus and better support the thousands of people who struggle with this complex eye condition every day.”
About the Nystagmus Network
Nystagmus Network
The Nystagmus Network is a national, self help organisation and was established
in 1984 to:
Raise awareness of Nystagmus
Provide information and support to people with nystagmus
Promote research into nystagmus
The group has charitable status and is a registered UK charity, number 803440.
Our Aims
The first priority of the Nystagmus Network is to alleviate widespread
unnecessary suffering among those affected by nystagmus. We do this through
emotional support, practical help and good quality information. In the longer
term the Nystagmus Network is also working to encourage research, in the hope
that a treatment will be found and eventually a cure.
Central to our aims is information. Lack of information is a source of distress
to parents of children with nystagmus as well as adult sufferers. Information
given by professionals at the point of diagnosis is often poor or non-existent.
Some sufferers are not even told that they have nystagmus. We work with
ophthalmologists, orthoptists, optometrists, specialist teachers of the
visually impaired (VI), social workers, VI organisations and other
professionals to help them understand the problems presented by nystagmus and
show them how they can be minimised.
We also work with individual sufferers and their families to remove the
isolation, loneliness and despair they often feel. We enable people to learn
from the experience of others how best to cope with this complex condition.
What we do
Support - We provide emotional support and advice for people with nystagmus and
their families (for example through our Insite Phone Service - see Contact
& Join)
Information - We provide good quality information in a variety of ways (for
example through writing articles for journals, through an accessible Website,
and by producing fact sheets on topics of interest to our members).
Awareness - We publicise the existence of the Nystagmus Network, ensuring that
newly diagnosed sufferers are informed of its existence. To provide continued
support to our members as and when people need it. To raise awareness of
nystagmus and its effects amongst the general public.
Marketing - we promote and market the Nystagmus Network by attending
exhibitions, meetings, conferences and talks.
We link families in similar situations so they can share their experiences.
Co-operation with other professionals - We work hard to build and maintain good
relationships with others.
Research -We encourage research into nystagmus.
Financial Viability - We pursue funding applications on behalf of the Nystagmus
Network to enable it to continue is vital work.
Good Management - We ensure that the charity is managed professionally and
efficiently. (for example by communicating mainly via email, by introducing
Direct Debit and Gift Aid schemes).