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NN teams up with Health Visitors

 

The Nystagmus Network (NN) is teaming up with the Institute of Health Visiting to produce two A4 guides – one for health workers and one for families. These short guides will give an overview of nystagmus and tips on how to help people with the condition. 

 

Nystagmus often becomes apparent only at 6-8 weeks of age, so health workers play a vital role in detecting infants with wobbly eyes. They are also well placed to support families waiting for confirmation of a diagnosis. 

 

NN has already contributed an article about nystagmus to the IHV website at http://www.ihv.org.uk/news_events/voices (see under April 7, 2014).

 

Focus on CVI and registration

 

For many with nystagmus, trying to register as sight impaired is a fraught issue raising many questions. Will I be able to register? What are the benefits of registration? Are there any drawbacks?

 

An article in our Focus 102 newsletter (March 2014) looks at the CVI (Certificate of Visual Impairment) process and some of the pros and cons of registration. You can read the full article at http://www.nystagmusnet.org/cms/index.php/nystagmus-in-the-media.

 

First Focus of Fourteen

 

The first NN newsletter of 2014 is certainly people Focused: read about an MP, an MBE and a teacher who’s made a CD. Members of NN met MPs in the Houses of Commons, World champion sailor Lucy Hodges was appointed an MBE and Chris Redfern has produced an album of songs with profits being donated to NN. Using Focus 102 you can update your calendar with NN events; there’s Open Day in June – yes June, Carrots NightWalk in September and Wobbly Wednesday in November.  Back to the Focus on people there are four real-life stories about what it’s like to have nystagmus.  Regular items include fundraising news and a story about Northwick (the bear with nystagmus).

Comments on Focus 102:

"Excellent edition found Bronagh's article very interesting as she has the same diagnosis and cause as our daughter. Keep up the good work." (Facebook)

 

 

 

 

"Brilliant edition of #Nystagmus Focus magazine, especially enjoyed Bronaghs article". (on Twitter) 

 

 

 

 

"On Northwick alone its worth like!" (on Facebook)

We send Focus to all members of the Nystagmus Network and it's available in print, pdf or audio. To join go to http://www.nystagmusnet.org/cms/index.php/join-online

 

NN announces two new grants for 2014

 

The UK’s leading supporter of nystagmus research welcomes applications for its 2014 grant programme. The programme is open to projects which aim to improve the lives of people affected by nystagmus and/or expand existing knowledge and understanding of the condition. It covers social research as well as vision science and medical research.

The first grant of £15,000 has a closing date of April 30th. The second, tied to the nystagmus awareness day Wobbly Wednesday, is for £10,000 with a closing date of August 31st. These new awards are in addition to the £6,000 small grants scheme introduced in 2013. NN will continue its partnership with Fight for Sight through the ‘Carrots NightWalk’, contributing £7,500 to a £15,000 single grant for nystagmus research.

 

Vivien Jones, President of the Nystagmus Network said: “We are delighted to announce this major expansion of our grant award programme. Huge thanks are due to our supporters, whose hard work in raising funds is making this possible. It’s because of our supporters’ efforts that we can put much more into nystagmus research, an area traditionally starved of funds. Thank you to the growing number of people who have taken on the challenge of fundraising for us – and long may it continue!”

 

In recent years NN has funded research by Universities in Leicester, Cardiff, Plymouth, Southampton and Moorfields Eye Hospital, London. Last year the charity also funded and organised the third international nystagmus research workshop at Abingdon. For applications forms or further information email John Sanders at ( This email address is being protected from spambots. You need JavaScript enabled to view it. ). 

 

We can help children with nystagmus – doctor

 

Consultant paediatric ophthalmologist and NN medical adviser Jay Self says simple interventions to improve the lives of patients with nystagmus continue to be overlooked. "Nystagmus is a complicated condition to treat, with some isolated cases, some patients with other eye diseases and some with systemic or neurological disease," he says. "So it is understandable doctors will focus on diagnosing associated diseases and excluding treatable causes as a priority, but that does not mean the rest should be simply written off."

Mr Self said many who are unable to receive treatment can be helped in a variety of simple but important ways, including simply fitting them with the correct and regularly updated glasses or contact lenses or sitting them on the correct side of the classroom.

He also suggested doctors should carefully assess if a child has a preferred head position to see more clearly and seriously consider registering young patients with a Certificate of Visual Impairment (CVI). If surgery isn't a possibility to correct the head turn. “Registering children with a CVI, even when their best, static visual acuity is reasonable, can impart a wide range of benefits which are easy for doctors to overlook," he said, adding: "The children we see in clinic today with nystagmus will be working age for 50 years or more, so can we afford to disregard them as being beyond help?"

 

Leicester: our 2014 Open Day venue

 

NN’s Open Day is going to Leicester this year for the first time. The date is Saturday, June 28. Our Open Days bring together 150 or more parents, professionals and people of all ages with nystagmus. It’s the one day of the year when those without wobbly eyes are in the minority.

 

 

 

This year we will be joined by paralympian Sarah Caffrey, representatives of the Cardiff and – of course – Leicester research teams plus local teachers of the visually impaired. We will have group sessions for parents, about employment and the basics – what’s it really like to have nystagmus for example.

 

 

 

Tickets are the same price as last year and include lunch and refreshments. NN members get a discount -- and we have a free crèche this year too. For more information and to book tickets go to https://www.eventbrite.co.uk/e/nystagmus-network-open-day-2014-tickets-10371729121.

 

 

 

Our previous Open Days have been in Birmingham, Bristol, London, Manchester and Nottingham. We’ve also held smaller events in Blackpool, Cardiff, Plymouth and Sheffield.

 

MPs support nystagmus awareness campaign

 

MPs from across the political spectrum are backing a call by the Nystagmus Network for better understanding and awareness of nystagmus. Following a drop-in session organised by Teresa Pearce MP (Erith & Thamesmead), MPs from Cornwall to The Hebrides are contacting their local GPs, clinical commissioning groups and specialist teachers of the visually impaired.

 

The MPs who attended the session on January 22 in the House of Commons expressed surprise at the lack of awareness, given that nystagmus affects one in 1,000 people. After speaking to adults with nystagmus and parents of children with the condition they were quick to grasp the challenges of having “wobbly eyes” in terms of education, employment and social situations.

 

NN has asked MPs to raise awareness of nystagmus among GPs and contact local Clinical Commissioning Groups to find out what information nystagmus patients receive at the point of diagnosis and what tests are carried out. The charity would also like MPs to contact Visual Impairment or Sensory Support teams in the education departments of their local councils to ask what support they offer students with nystagmus.

 

Ms Pearce, whose partner and grandson have nystagmus, said: “I am pleased that so many MPs attended this event in the Commons and have pledged to write to their local GPs, Clinical Commissioning Groups, and local councils, as part of the Nystagmus Network’s campaign to increase awareness of this condition. Nystagmus affects a lot of people, but very few people know much about it, and often what they do know is not accurate. What was clear from the event was that only by increasing understanding of the causes, symptoms, and treatment of this condition will people with nystagmus receive the support and assistance they need to reach their full potential. I commend the Nystagmus Network for all the work they are doing to raise awareness of nystagmus and for a very successful start to their campaign.”

 

BBC highlights nystagmus

 

"When he was walking he'd end up bumping into walls, chairs, people... everything," mum Nicola Oates tells the BBC of her son Thomas. Most parents of children with nystagmus will recognise the situation straightaway. The hard part is understanding what people with nystagmus can or cannot see and explaining the condition to others.

 

This short feature on the health section of the BBC website helps to answer some questions about the condition. As well as Nicola, the article includes comments from consultant ophthalmologist and Nystagmus Network adviser Jay Self and NN information and development manager John Sanders. Read the full article at http://www.bbc.co.uk/news/health-25669601,

 

NN to talk to MPs in London

 

Five of us from the Nystagmus Network are off to Parliament in two weeks time to talk wobbly eyes to MPs. This is a first for us and only possible thanks to Teresa Pearce MP whose husband and grandchild have nystagmus. If you live in the UK, please help us get the most out of this opportunity by emailing your MP and asking them to come along and see us. We’ve drafted an email for you to send below. It’s easy to find your MP and his/her contact details at http://findyourmp.parliament.uk/

 

Dear

 

Teresa Pearce MP is holding a drop-in session for other MPs in the House of Commons (Room W1, just off Westminster Hall, 2 - 4 pm) on January 22. The session is about the eye condition nystagmus. I/my child have/has nystagmus as do approximately 60,000 others in the UK.

 

You may not have heard of nystagmus, but you will (almost certainly without knowing it) have met people with the condition. Nystagmus is the most common serious form of visual impairment among children – and it’s incurable. It affects eyesight in many subtle ways, not just distance vision. Most people with nystagmus will never drive.

 

As one of your constituents I am asking you to attend this event to find out more about nystagmus and what you can do to make a difference. Teresa’s husband and grandchild have nystagmus. Representatives of the Nystagmus Network charity (www.nystagmusnet.org) will be available to answer your questions on the 22nd.

 

Kind regards,