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Fight for Sight survey on eye conditions and sight loss

Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research.

You may not be aware but currently sight loss costs the UK economy over £28 billion each year. Yet only 1% of public grant funding for medical research is spent on eye research. That’s just £20 for each person living with sight loss.

Fight for Sight is determined to change this – but they need your support. Taking part could help them secure urgently needed funding for pioneering eye research projects.

Fight for Sight have asked Populus and Kaleidoscope Research to conduct the survey. We are independent research organisations and the information you share with us via this survey will be used for research purposes. The findings may be used as part of the evidence Fight for Sight present when seeking funding for eye research projects, in reports and as part of their publicity and campaigns work. Any findings published will be anonymised and not used in a manner which could identify you. We will respect your privacy at all times and your information will be kept securely.

To take part in the survey please click on the link below or paste it into your browser, it should take no more than 15 minutes to complete.

Take the survey online here.

If you would prefer to complete the survey by telephone, please contact Fight for Sight during office hours on 020 7264 3900 and they will arrange this for you.

If you have any queries or survey related issues please contact [email protected]

Mike wears his Nystagmus Network T short and smiles for the camera

Trekking through Middle Earth for nystagmus research

Follow Mike’s wiggly progress on his Facebook page, here and donate to his Nystagmus Network fundraising page, here.

A sight-impaired young Englishman, Mike Larcombe, is preparing to trek across New Zealand to raise money for a complex eye condition that blurs his vision.

Mike has nystagmus, which he refers to as “wiggly eyes” and so does his young nephew.

Born in Southampton, UK, Mike has lived more recently in Australia and spent holidays in New Zealand. He says:

“I have a deep respect for New Zealand, having spent several months there on a working holiday previously. I relish the chance to do something positive to help others with nystagmus. ”

Mike will set off from Bluff at the tip of the South Island on 16 December to hike along the Te Araroa or Long Pathway trail, all the way up to Cape Reinga at the top of the North Island.

He expects to be walking for 4.5-6 months, wearing through about 6 pairs of shoes. He’ll be camping and staying in huts and hostels along the trail, paying his respects to Maori culture, while raising funds for the nystagmus community.

The funds raised will go to nystagmus charities in New Zealand and Britain for research and support – the Blind & Low Vision NZ, Nystagmus Network and Gift of Sight. All 3 charities are working towards a better understanding of the condition and, ultimately, to find a cure.

Mike says he wants to demonstrate to other people with nystagmus, including his 2-year-old nephew, Archie in Britain that they can still live rich, full lives.

Despite his much-restricted vision, Mike graduated as an electronics engineer. He has been working in Brisbane, but has resigned for the trek.

“While I’m unable to drive a car because I can’t see far enough to qualify for a licence, I can work closeup on complex electronics equipment,” said Mike.

“I’m confident I’ll be able to wind my way safely through the land many people around the globe now know as Middle Earth. If I do stray from the path, I’m sure a friendly Hobbit or local Kiwi will guide me in the right direction.”

“When you have restricted vision, other senses come into play – smell, touch and sound in particular.”

“I image myself absorbing those other stimuli as I lightly tread the earth through the islands of New Zealand – a very special place with an incredibly rich culture.”

You can follow Mike’s wiggly progress on his Facebook page, here and donate to his Nystagmus Network fundraising page, here.

Would your child like a German pen friend?

Thanks to our partnership with the German Nystagmus Network, we can now offer children and young people, who have nystagmus, living in the UK, the chance to make friends with someone in Germany.

If your son or daughter would like to send and receive postcards and letters, please complete the form below.

Through our partnership with the German Nystagmus Network we are offering UK families the chance to build friendships with German families. Each charity will provide the other with a list of children looking for pen friends. This list will include only the first name, age and town where they live. When a match is found we will contact the parents by email to ask for their permission to share their child’s surname and address with the other family. No contact details will be kept on file after the match is made.

13% of MS patients have acquired nystagmus

In a report presented this summer, 15 of a sample of 116 patients with Multiple Sclerosis were found to have Acquired Nystagmus.

Ocular manifestations often present first in multiple sclerosis

September 6, 2019

COEUR D’ALENE, Idaho — There is a high frequency of ocular manifestations in patients with multiple sclerosis, both at onset and during the disease course, according to a poster presented at the Women in Ophthalmology Summer Symposium.

In a retrospective, population-based study, Sarah Chaoying Xu, MD, and colleagues at Mayo Clinic reported eye conditions in 50% of 116 patients with MS in Olmsted County, Minnesota. Visual manifestations were the second most frequent presenting symptom behind sensory symptoms.

Optic neuritis was the most frequent ocular manifestation, reported in 43 patients, with 26 of those manifestations reported at onset of disease.

Internuclear ophthalmoplegia was the second most reported manifestation, with nine cases reported at onset and nine cases acquired after onset of disease. All 18 patients demonstrated slow saccades, 10 of the patients were symptomatic with diplopia and eight patients were asymptomatic. Nystagmus was reported in 15 patients.

Mean patient age was 37.1 years. Thirty-four percent of patients were male and 66% female. Criteria for inclusion required a neurologist-confirmed new diagnosis of MS between Jan. 1, 1998, and Dec. 31, 2011.

The high rate of ocular manifestations in the population suggests “the potential utility of neuro-ophthalmologists in the care of MS patients,” the authors wrote. – by Eamon Dreisbach

Reference:

Xu SC, et al. Frequency of internuclear ophthalmoplegia, nystagmus and other ocular manifestations in multiple sclerosis; a population-based study. Presented at: Women in Ophthalmology Summer Symposium; Aug. 22-25, 2019; Coeur d’Alene, Idaho.

Disclosures : The authors report no relevant financial disclosures.

Read the original report, here.

Trustees smile at the camera.

Are you a digital champion?

Do you have the digital know how to take the Nystagmus Network up to the next level?

The Nystagmus Network is keen to recruit a new trustee with the right skills set.

If you have a connection with nystagmus, have digital experience and expertise, could easily travel to London for quarterly meetings and would be interested in joining our strategy team, please get in touch.

  • To apply, or to request a meeting, please email us.

And the winner is …

The results are in from our Facebook and Twitter polls and we can finally announce the name of our fabulous ‘Nystagmus is …’ competition winner – drum roll, please … it’s Samantha Keeley.

Samantha’s winning description of nystagmus is:

“Where you see everything but the one thing you are looking for which was right in front of you all along”.

Samantha sums up perfectly the phenomenon of visual crowding, so often associated with nystagmus.

Samantha wins honorary membership of the Nystagmus Network for one year, a free place at Open Day and a Nystagmus Network T-shirt.

Thank you to everyone who entered our competition. Each and every one of your entries will be included in our new publication “Nystagmus is … a guide to nystagmus for adults” which we hope to publish later this year.

Well done, Samantha!

Mike wears his Nystagmus Network T short and smiles for the camera

Mike’s wiggly walk – video update

Mike has nystagmus and so does his young nephew, Archie.

Later this year and well into 2020, Mike will be walking the length of New Zealand to help find a cure for nystagmus.

The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in a kayak, to raise funding for two charities close to his heart: Nystagmus Network and Gift of Sight.

Mike will set off on his walk in December this year. He thinks it will take him around 131 days to complete. We are in awe of his dedication and will be with him in spirit every step of the way. Meanwhile, Mike will be keeping us updated with his video blogs. You can view his first video, by clicking here.

Read about Mike’s inspiration on his Walk for Wiggly Eyes website.

We publish our annual review 2018

Trustees are pleased to announce that the 2018 Annual Review of the Nystagmus Network is now published on the Charities Commission website.

Chairman of the charity, Richard Wilson OBE, says:

“In summary, 2018 has been an outstanding year of success for the Nystagmus Network, building more awareness, investing in more research, offering more support and guidance, boosting our membership and completing the transfer to a new legal entity. It looks like we will do even more in 2019, given our new research partnership and our investment in training to give us more capacity to support parents through the education minefield for those affected by nystagmus.”

Read the full report, here.

How amazing is Sonny-John?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

On Nystagmus Awareness Day itself a family shares their son’s amazing nystagmus story …

“Our eldest boy, Sonny-John has nystagmus, and from as long as we can remember he has been competitive. As soon as he learnt to crawl he had to be the fastest, actually motoring round on his hands and feet like Mowgli from Jungle Book, as it was quicker than crawling round on all fours. 

‘He loves physical activity and we’re sure, if he could do sports all day long he would, and he has energy levels we can only dream of.

‘Sonny-John started gymnastics aged 4 where he went to Notts Gymnastics pre-school sessions.

‘Apart from gymnastics he’s taken part in football, kickboxing, GAA football, boxing, tennis and swimming to name a few. 

‘He’s a very strong swimmer and has achieved his badges through to 800m.

‘But as Sonny got older and some of the sports got faster he struggled in situations where there were people moving quickly around him, and eventually it all got too much for him. He will still play any sport going given half a chance, but he can’t always compete as well as he would like.

‘Thankfully around this time Sonny-John started to concentrate on his gymnastics and was lucky enough to be selected for the Nottingham Gymnastics Boys Squad in April 2017.

‘He absolutely loves gymnastics and it’s been amazing to watch him grow in confidence and skill. Recently he competed in the East Midlands Under 8 Championships where he earned 5 individual golds and 1 silver medal, and was also awarded the East Midlands Under 8 all-round gold medal.

‘We are truly blessed and grateful to have such a talented boy, and, unless we point it out, most people don’t pick up on his nystagmus. 

‘We’ve had great support from the Nottinghamshire Schools Visual Impairment Officer and the teacher packs from the Nystagmus Network have helped immensely educating his coaches all about nystagmus.

‘Prior to Sonny-John coming along neither of us had any previous experience with nystagmus. So, when you have a child who is diagnosed as having nystagmus it is very daunting, as you don’t really know how it will impact him and what to do for him. All you want to do is take it away for him and make his eyesight normal. When you find out it’s permanent and will never get better it’s a scary feeling and you feel extremely helpless as a parent.

‘Sonny-John, to his credit, never plays on it and rises to any challenge. It’s his strength that makes our family think anything is possible for him.

‘As we said, initially we knew very little about nystagmus and the information we were given by the Nystagmus Network literature and the couple of annual Nystagmus Network Open Days we’ve attended have been truly invaluable. Myself and my wife have completed a couple of sponsored tasks to raise money for the charity and we’d encourage anyone to get involved with the Nystagmus Network and the great work they do to raise awareness.”

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.