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Thank you John and Crane Valley GC

Thanks to John Gray and his Dorset golf club for their generosity, the Nystagmus Network will be able to continue to invest in research. John had no hesitation in nominating the Nystagmus Network as his captain’s charity of the year when he took up the reins as captain of Crane Valley Golf Club in 2017.

His choice was in honour of his young grandson, Caleb, also known by everyone as CJ. CJ was born with nystagmus. John’s goal was to raise awareness of the condition throughout the membership and beyond and also to raise funds for the charity.

John achieved both of these things, even meeting another family with a child who has nystagmus along the way.

CJ was there to help Grandpa with all the big club occasions, too. The highlight of the year was a fun day with a Pirates of the Caribbean theme and disco in the evening, with CJ as the guest of honour.

John’s year as captain ended this month with the AGM and presentation evening. Nystagmus Network trustee, Peter Greenwood, himself a keen golfer, went along to receive a cheque for £5,114.50

Thank you to everyone who contributed: Crane Valley GC members, friends and family, to CJ for helping and, especially, to John.

Broadway swimming club joins #nystagmusbigswim

We’re celebrating today the huge achievements of Lucie Wood and her family in support of Wobbly Wednesday 2017 (national and international Nystagmus Awareness Day) and the #nystagmusbigswim.
Lucie’s daughter has nystagmus. She, her sister and their 2 cousins decided to take part in the #nystagmusbigswim. When they asked their swimming club, Broadway ASC in Oldham, if they could ‘borrow’ a lane, the committee decided to get the whole club involved. Thanks to Lucie and her family the club raised £500 for nystagmus research and all those families now know about nystagmus.
The picture shows Lucie’s Mum, Pat, receiving the cheque, on behalf of the Nystagmus Network, from Danny Wood, committee member at Broadway ASC .
HUGE THANKS to Lucie, her family and Broadway ASC.

Want to run the London Vitality 10k for the Nystagmus Network?

If you’re looking for a challenge and would like to help this charity raise funds, why not sign up for one of our free places in the London Vitality 10k on 28 May?
All we ask is that you set up a Justgiving page for your sponsors, agree to raise at least £100 for the charity and wear your free Nystagmus Network running vest to help us raise awareness.

Interested?

Please contact us here.

Maria Theodorou speaks at a Nystagmus Network event.

Soft contact lenses may improve vision in adults with CIN

A pilot randomised study, led by Maria Theodorou FRCOphth, PhD at Moorfields Eye Hospital, London, funded by the Nystagmus Network/Fight for Sight, Moorfields Eye Hospital Special Trustees and the National Institute for Health Research (NIHR), has shown that wearing soft contact lenses may help people with CIN see a little better.

The purpose of the study was to see whether soft contact lenses could improve vision more than glasses and whether soft lenses were as effective as rigid ones.

38 adult volunteers with CIN wore soft contact lenses (randomly with and without corrective prescription) for 2 weeks. Observations were made around the ease and safety of wear as well as any effect on visual acuity and nystagmus waveform.

27 people successfully completed the trial, a small number having found soft contact lenses difficult to get in and out of the eye or uncomfortable to wear. On the whole, the lenses were tolerated well and a trend was identified towards an improvement in visual function after the 2 weeks.

New research project on visual crowding in CIN

A new research project is being undertaken at Moorfields Eye Hospital and University College London. The aim of the study is to understand better the visual abilities of people with congenital nystagmus, with a particular focus on visual crowding, a phenomenon which occurs when an object that is visible in isolation becomes impossible to recognise when surrounded by other objects.
The Nystagmus Network is supporting Mr Vijay Tailor, Paediatric Clinical Trials Research Orthoptist and Clinical PhD Training Fellow, to recruit suitable participants.
Subjects should have a formal diagnosis of Congenital Idiopathic Nystagmus and be aged 18 to 50.
People who also have albinism or strabismus amblyopia (‘squint’ or ‘lazy eye’) are not suited to this particular study.
If you have short or long sight, this is not a problem provided you wear prescription glasses or contact lenses to correct this.
If you would like to find out more about the research project and apply to take part then please complete and submit the form below. By completing the form you are giving us permission to pass on your details to the relevant research team.
Thank you.

Nystagmus Network launches new publication on nystagmus and driving

Whether or not people with nystagmus can drive is probably the most frequently asked question the charity receives. Because nystagmus is such a complex condition and affects everyone differently, there is no definitive answer. In our new publication, Nystagmus and Driving, we address all the issues, answer your questions and signpost to free and concessionary alternatives.

Nystagmus Network and Fight for Sight fund two new nystagmus research projects

Nystagmus Network and Fight for Sight have partnered to fund research aimed at the early detection of nystagmus and improve the quality of life of those with nystagmus

Fight for Sight, the UK’s leading eye research charity, and Nystagmus Network, the foremost charity in the UK providing support and information about nystagmus, are working in partnership to fund research into a complex condition characterised by repeated involuntary movement of the eyes. Through the partnership, two research projects into nystagmus have been awarded.

Dr Lee Mcilreavy from Cardiff University will use the funding from Fight for Sight and the Nystagmus Network to determine whether a novel eye tracking approach can correctly identify the patterns of eye movement made by those with infantile nystagmus. This study could lead to a simple and child-friendly eye tracking test that does not rely on expensive technology. This has the potential to detect the condition earlier and allow children and families to receive an earlier diagnosis.

Dr Helen Griffiths, at the University of Sheffield, has been awarded funding to develop an image stabilisation technology in virtual reality (VR) to treat a troubling symptom called oscillopsia, where the individual perceives the world in a continuous and erratic motion due to involuntary movements of the eyes. She will work towards stabilising images on the retina in individuals with acquired nystagmus. A VR headset with integrated head tracking will be configured to track the direction of gaze. This data will be used to adjust the VR display in real time so that a stable view is projected onto the retina of the user, independent of eye orientation. For as long as the user wears the headset, the observed image will be stable. This alternative solution will offer relief to those who have this form of nystagmus.

Michele Acton, CEO of Fight for Sight, said: “We are pleased to be working in partnership with Nystagmus Network to fund research into this complex eye condition. Both research projects have the potential to positively impact the lives of those living with nystagmus. Only by funding research will we begin to tackle nystagmus.

”Vivien Jones, President of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “It is a pleasure to join with Fight for Sight in making this award to Cardiff University for their plan to develop a means of diagnosing infantile nystagmus in the community setting. We hope that this award will mean the plan can be brought to fruition with all the benefits this will bring to families in terms of more accessible diagnosis.

We are also delighted to join Fight for Sight to fund a project developed by the University of Sheffield to deal with one of the most distressing symptoms that can go with acquired nystagmus – oscillopsia, where the individual perceives the world in constant motion. Sheffield propose that a way of offering relief from this is through stabilisation of the image on the retina by developing image stabilisation technology in virtual reality (VR). This would be a major breakthrough for those who acquire nystagmus in later life, and who suffer from oscillopsia.”

 

Richard receives New Year’s honour

The Nystagmus Network is delighted and proud to announce that our charity Chairman, Richard Wilson, has received an OBE in Her Majesty the Queen’s New Year’s Honours list today.

Richard says:

“This award is primarily for my work as a Civil Servant for the past 36 years, but undoubtedly it also reflects my time as a Trustee and Chairman of the Nystagmus Network.  I am hugely humbled and proud to have been recognised in this way.”

 

Research investment by the Nystagmus Network

Thanks to generous donations and income from membership subscriptions, trustees of the Nystagmus Network were able to allocate their full research budget to new and continuing nystagmus studies in 2017. Towards the end of the year an opportunity arose to fund an additional research project, likely to have a huge impact on the quality of life of people living with nystagmus. Trustees therefore decided to extend their financial commitment to research for the current year in order to initiate the project without delay. There will be a national press release to announce the detail of the new study soon.
Trustees have already agreed a further increase to their planned spend on research for 2018 in order to drive additional studies. None of this would be possible without the continuing commitment of our supporters and fundraisers and our long standing partnerships with the leading UK hospital and university teams working in the field of nystagmus.
You can help us continue to fund nystagmus research by fundraising or donating. Thank you.

Mousetrap Theatre Experience, London

The Nystagmus Network is considering organising a theatre experience for children and young people with nystagmus and their families, in partnership with Mousetrap Theatre Projects.
The day would include a drama workshop, touch tour of the theatre (where children get to see costumes and props up close) and tickets for a London show. It would also be a great opportunity to meet up with other nystagmus families.
To find out what it might be like, please watch this video or visit Mousetrap’s website. 
If you would be interested in taking part, please complete the contact form:

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