Our Complete Article Collection

Nystagmus Network – Blackpool Tower tops Wobbly Wednesday bill

Tourists and local people will be able to see Blackpool Tower lit up in blue on Wednesday 4 November in celebration of Wobbly Wednesday.  That is the day when Nystagmus Network is leading a campaign to raise awareness of the eye condition nystagmus.   This will be the second year that Blackpool Tower has been part of Wobbly Wednesday.  Children with nystagmus will be talking to school friends about what it’s like to have the condition where your eyes are moving all the time.  At hospitals and eye clinic staff will be educating patients about nystagmus which affects 1 in … Read more

Little Lion’s Guide to fun VI activities and days out.

After the many stages I went through following Leo’s diagnosis; hopelessness, utter despair, denial, research, grief, hope, I finally got to some sort of ‘acceptance’ phase, and boy what a relief that was. It’s an up and down kind of phase and, yes, there are still ‘punch in the gut ‘I wish…’ moments but you learn somehow, to find the positives in this new life you’re about to embark on. One of the things that I try to do for Leo is to encourage him to get involved in all sorts of different experiences both with and without other visually … Read more

Nystagmus Newsletter- Research funding, fundraising thanks and open days!

Applications invited for nystagmus research funding The Nystagmus Network is inviting applications for two new research grants, one of £10,000 and one of £1,500, to improve the lives of people affected by nystagmus. The charity will consider proposals from hospital and university based researchers and clinicians. The new money is available thanks largely to a substantial donation from the EBM Charitable Trust. To apply for a nystagmus research award please contact John Sanders, Information and development manager, email: john.sanders@nystagmusnet.org Tel: 029 2045 4242.  The closing date for grant applications is Monday, June 15, 2015.   New research on nystagmus and … Read more

Nystagmus Network – Born to Run

A mother’s desire to meet people going through the same experience, was the motivation for the founding of a support network for parents and professionals interested in the eye condition nystagmus.  Now, thirty one years later her son Sam is running the Virgin Money London Marathon 2015 for the charity he is a trustee of, which has become the Nystagmus Network.     Having nystagmus means that Sam Jones’ eyes are constantly moving.  However, that has not stopped him from having a successful career in the civil service, currently working in Westminster.  Sam demonstrates that most of the things his … Read more

Cerebral Visual Impairment Convention: Parent Carers and Professionals all welcome

The Cerebral Visual Impairment Society is very excited to announce our inaugural convention for parent carers, individuals with CVI and professionals. This is your opportunity to meet, learn from and ask questions of some of the leading experts in the field of cerebral visual impairment. Your will also hear first hand experience from an adult with cerebral visual impairment and how parents support their children with cerebral visual impairment . Speaking at the convention will be: Professor Gordon Dutton, Consultant Ophthalmologist and Professor of Vision Sciences, Glasgow Caledonian University. Dr J Margaret Woodhouse OBE, Optometrist and Senior Lecturer, Cardiff University. Mr … Read more

Nystagmus Network: Parlez-vous Geordie?

Organisers of this year’s Nystagmus Network Open Day will welcome people from across Europe to Newcastle’s Centre for Life on Saturday 9th May.  The Open Day is a great opportunity for people and families affected by the eye condition to meet others in the same situation.  Delegates can also learn from vision scientists, researchers and eye health professionals about the cause, diagnosis and treatments of nystagmus. International awareness of the annual Open Day has increased (thanks largely to social media) in recent years.  Previous events have been attended by people from Belgium, the Netherlands, Sweden and Australia. This year has … Read more

MEETING THE CHALLENGE, DISMISSING THE ‘NO NO’

Here is a great guest blog post from Ian Beverley, you may have read some of his pieces on the vitalk.org website.  I really enjoy Ian’s blogs and share many of them through the throughscarlettseyes.com social media channels.  Click here to read more from Ian. Firstly, many thanks to Charlotte for inviting me to contribute to this blog.  I’m very honoured to have the opportunity and I hope that what follows is of interest. As a matter of curtesy and politeness, I must first introduce myself.  My name is Ian Beverley; I’m 42 years old and have been visually impaired … Read more

Inspirational Member of the VI Community of the month! Interview with mummy Jane Ring

Hi Jane, thank you for agreeing to take part, can you first start by introducing us to you and your family…. age, location, family members etc. My name is Jane Ring, I live in Exeter with my husband Neil, our beautiful six year old daughter Chloe and our three legged cat Giggsy. Chloe is our only child as sadly we cannot have any more.   Can you tell me more about the wonderful Chloe? Chloe is unique as she was born profoundly deaf and severely sight impaired. She has a type of LCA- Leber’s Congenital Amaurosis (rod and cone dystrophy) … Read more

Evelyn! Her journey so far, by mummy Emma :)

Evelyn was born in March 2010, a healthy full term baby following a straight forward pregnancy and labour. When she was a few weeks old I began to feel a niggling concern that her eyes weren’t quite right. She wasn’t fixing on objects or faces, she didn’t make eye contact and her eyes seemed ‘busy’. I took her to the GP when she was 3 months old and he agreed it needed investigating further and referred us to the local eye clinic for a check up. Nothing could have prepared us for the whirlwind which was to follow that initial … Read more

What is Cerebral Visual Impairment?

Cerebral Visual Impairment (commonly referred to as CVI) is a form of visual impairment caused by the brain not being able to process information from the eyes passing along the visual pathways in the brain. It is the commonest cause of visual impairment in children in the developed world. If you know someone who has a diagnosis of cerebral visual impairment or if you or someone you know has difficulty with any of the following activities and there is no apparent reason why, then the CVI Society may be able to help you find out more information and to connect with other … Read more