Our Christmas stars

This festive season the Nystagmus Network is celebrating the children and adults with nystagmus who fill the lives of their families and friends with twinkling light, love and laughter.

We’re asking you to tell us about your nystagmus stars – the adults and children who fill your life with light and make you proud of their achievements all year round.

To have your nystagmus star featured at the top of our Facebook page this December, please send us a photo, their first name and why you think they’re a nystagmus star.

To make a donation to our Christmas Stars appeal to help us support everyone with nystagmus to be a star, please CLICK HERE.

Thank you

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.

Our #GivingTuesday Appeal

Please help the Nystagmus Network support more children to access learning at school, by pledging £5 on #GivingTuesday.

The Nystagmus Network provides an education advocacy service for parents and carers of children and young people at nursery, school or college to ensure they have equal access to learning. We’d like to train another volunteer education advocate to help Frances and Claire with their enormous workload. Please help us to meet this need by making a donation this #GivingTuesday.

Every £5 donated will help us provide education advocacy to parents and carers of children and young people with nystagmus.

Our appeal target is £850 which is the cost of initial training for a new volunteer education advocate.

Thank you

Please donate here – thank you

Are you ready for an Ultra Challenge?

Ultra Challenges for 2020
WALK, JOG, or RUN
25km, 50km, or 100km
Your challenge – your pace

Take part in the Ultra Challenge of your choice for the Nystagmus Network. Simply check the charity when you register and choose your fundraising option. We’ll be happy to part fund your place.

Walk, Jog or Run at YOUR pace on the Ultra Challenge Series event of your choice. Join 20,000 others in 2020 of all ages and experience for an unforgettable Challenge. It will be rewarding, fun, and absolutely achievable with your resolve and determination alongside first class support.

Are you a regular walker and new to endurance events? Perhaps a seasoned trekker looking for testing adventures? Or even a marathon runner wanting to ‘up’ your distance? Push yourself further – 100km Full Challenge, with Half and Quarter options also available. Whether it’s along magnificent coastal scenery, or in stunning open countryside, there’s an Ultra Challenge for you.

Take on an Ultra Challenge for the Nystagmus Network in 2020. Click here for details.

Or watch a video here.

Your nomination could help us win £25,000!

We could receive a grant of £25,000 but we need your help!

SEIB Insurance Brokers will grant a total of £50,000 to charity in 2020 as part of their annual SEIB Giving campaign. The winning charity will receive a grant of £25,000 and another £25,000 will be split between good causes. 

As part of this they are currently asking members of the public to nominate the charity they would like to see win the £25,000. Nominations are now open but only until November 28th 2019.

To nominate us go to www.seib.co.uk/giving. You will also need to add our charity number, which is 1180450.

Thank you for your support.

We’ve been paid!

Huge thanks to all our supporters who’ve been shopping all summer long using Easyfundraising. Thanks to you, we’ve just received an Easyfundraising total donation of £254.94.

Please use Easyfundraising when you’re doing your Christmas shopping, too and help us raise even more money for nystagmus.

Not signed up yet? Please click here.

It’s fundraising for free!

THANK YOU!

Help us win a £1,000 donation

A specialist charity insurer has launched its annual festive campaign to donate £1,000 to 120 charities over the 12 days leading up to Christmas.

The campaign is called 12 Days of Giving and is being run by insurance firm Ecclesiastical. Winners are drawn at random. The more times a charity is nominated online the better chance they have of being selected for one of the daily awards.

Please nominate the Nystagmus Network using the online form via the insurer’s website. You will need to give the following details:

Charity name: Nystagmus Network

Registered charity number: 1180450

Why we should receive the money.

Nominations will remain open until midnight the day before each draw. Draws will take place each weekday from 5 – 20 December 2019.

The more nominations we receive the greater our chance of winning, so please spread the word and encourage your friends, family, colleagues and anyone else you can think of to nominate us too!

THANK YOU for your support.

Bungee jump for nystagmus

The Nystagmus Network is offering a free bungee jump to anyone who can guarantee to raise at least £100 in sponsorship for the charity.

Your jump can take place at any one of 8 locations across the UK.

To apply, please complete the form below. Thank you.

Could you walk eye to eye for nystagmus research?

In 2019 20 Nystagmus Network supporters, their friends and family members raised £11,500 for nystagmus research by taking part in the Eye to Eye walk.

We’re doing it all once more in 2020, but we need your help to raise even more money for nystagmus research at Moorfields Eye Hospital and University College, London.

You can sign up as an individual or as a team to walk either 4 or 14 miles through London from Moorfields Eye Hospital to the London Eye on Sunday 8 March.

To get started, please set up your Justgiving page and link it to our campaign: Eye to Eye Walk for Nystagmus Research.

Then sign up for the Eye to Eye walk 2020, HERE.

Thank you