The fingers crossed logo of the National Lottery Community Fund

Thank you to National Lottery players

Please click image to play video.

Thanks to the generosity of National Lottery players, the Nystagmus Network is in receipt of a further grant to support the work of the charity.

This welcome additional funding is enabling us to continue delivering support and information services to the nystagmus community, albeit virtually.

Charity staff are busier than ever answering enquiries by phone, email and on social media and now host monthly zoom get togethers for people living with congenital or acquired nystagmus and parents of children and young people.

There’s no need to feel anxious, alone or uninformed. We’re still here for you thanks to the National Lottery Community Fund.

#CommunitiesCan

Find out more about our virtual get togethers here

In the video, Nystagmus Network Chairman, Tim, thanks National Lottery players and the nystagmus Community.

The banner of Ecclesiastical Insurance. There is a pile of 12 Christmas presents and the words 12 days of giving, please noimate us and help us win and Ecclesiastical.

Please nominate the Nystagmus Network

Please nominate the Nystagmus Network to win a £1,000 Christmas bonus as part of Ecclesiastical Insurance’s annual 12 days of giving festive campaign.

Ecclesiastical will be awarding £1,000 to 12 charities in 12 days this December. Please help us be one of them.

Nominations are open now until 21 December.

£1,000 would pay for nystagmus information leaflets in hospitals across the UK.

Orange button

Sam's bike is leaning against railings in a mountainous landscape.

Sam’s challenge of a lifetime

In June 2021 Sam will embark on the challenge of his lifetime as he cycles 500 miles in 8 days on the North Coast 500 Cycle Ride for the Nystagmus Network.

But who is Sam?

Find out all about Sam and his challenge at the Nystagmus Network virtual Open Day.

Please register here to join us for all the presentations

Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.

It’s still possible to run a marathon this year. You’ve been keeping fit during lockdown. Your training continued on your daily time outside. All the big runs are cancelled, but … you can still run – on a virtual track with Strava.

Your run, how, where and when you want it – you can even take your time!

Want to run the virtual Great North Run for the Nystagmus Network?

You can! Here’s how:

Virtual Great North Run

Want to run the Edinburgh Festival Virtual Marathon Challenge for the Nystagmus Network?

You can! Here’s how:

Edinburgh Festival Virtual Marathon Challenge

Want to run the virtual 40th London Marathon for the Nystagmus Network?

You can! Here’s how:

London Marathon

Want to run the Brighton Marathon 2020 for the Nystagmus Network?

You can! Find out how, here:

Brighton Marathon 2020

Want to raise some sponsorship for the Nystagmus Network?

You can with Justgiving.

Set up your Justgiving page here

The Nystagmus Network eye logo and the words Training the Professionals

Training eye care professionals

High street optical staff need to understand the complexities of nystagmus, how to test the sight and how to dispense any corrective glasses or contact lenses.

Due to the cancellation of so many routine eye clinic appointments during the current pandemic and the signing off of non-urgent cases, such as patients diagnosed with nystagmus, local opticians are now seeing increasing numbers of these patients in their practices.

Following the success of 3 webinars the charity organised and hosted in May 2020, attended by a total of over 900 dispensing opticians and optometrists, the Nystagmus Network is planning to host a further 2 webinars on nystagmus for eye-care professionals.

But we need funding to do this.

That’s why we’re fundraising with The Good Exchange. Please visit our campaign page and share it with your networks.

THANK YOU

See our campaign page here.

The Nystagmus Network appeal page on the BBC Radio 4 website, showig a picture of Richard Osman and details of the appeal.

Missed the appeal? Listen again!

If you missed Richard Osman presenting the Nystagmus Network charity appeal on BBC Radio 4 at 07.54 this morning you can listen again now.

Listen again here

Make a donation to the appeal here

Huge thanks to Richard and to everyone for donating to the appeal. Your generosity will ensure that the charity can continue to support the nystagmus community.

Richard Osman

Richard Osman to voice Radio 4 appeal

The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.

The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.

Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.

Hear Richard talk about the Nystagmus Network here

The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.

Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.

The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”

Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.

The appeal will be broadcast on Sunday 5 July at 07.54 and at 21.25 and again on Thursday 9 July at 15.27 on BBC Radio 4

  • DAB BBC Radio 4
  • FM 92 – 95 FM, 103-105 FM
  • LW 198 Long Wave.

Picture of Richard Osman courtesy of Penguin Books

Please click here to donate to the appeal – thank you

A basket of mascots and the words 'sold out'.

Sold out

Thank you to everyone who sponsored Sue to knit 26 nystagmus mascots wearing running kit for her recent 2.6 challenge.

Thank you, too, to everyone who ordered a mascot.

All 26 mascots have now been sold, but Sue has promised to make some more as soon as she can.

Meanwhile, you can still order a regular nystagmus mascot, wearing a warm woolly hat and scarf, while stocks last.

Visit our online shop here

Boost it for June

WALK, JOG, or RUN

Anywhere – Anytime…

THROUGHOUT JUNE 

939 Spacer

From 50 km up to 500 km…

You choose Your challenge

2019 Divider 699

Sign Up Now…

With relaxation of the restrictions on travel and exercise, June is ideal to enjoy the great outdoors, push yourself further, and get into shape for the summer!

Join our virtual event – You choose Your challenge from 50km up to 500km, spread it throughout June – share your story, travels, or treadmill with others – and log your distance if you want to.

• Qualifying period – all of June 2020  

• It’s 50km up to 500km – you choose!

• Walk, Jog, or Run it – anywhere!

• No rules – just community and honesty !

• Option to log distances on STRAVA

• Special ‘Boost it’ Challenge Medal

• Commemorative ‘Rainbow Neck Buff’

• Printable Boost it for June Certificate

• June ‘Boost it’ is open to any one

• Sign up by 12 June at the latest

• £12.50 to join (inc medal, buff, p&p)

Banner Spacer Smaller

Get your family and friends involved, sign up – get walking, jogging, or running – adhere to social distancing – and share your journey with others. Fundraising to help some special causes as we all go along, would provide an extra boost!

Sign Up Now…

A picnic hamper full of knitted mascots.

Sue’s 2.6 challenge – complete!

Sue has finished her 2.6 challenge ahead of schedule. She has knitted 2.6 special edition Nystagmus Network mascots in less than 26 days!

Each mascot wears running kit to signify that the 2.6 challenge was intended to replace this year’s London Marathon, cancelled due to the pandemic.

So far, Sue has raised £315 in sponsorship for the Nystagmus Network. She hopes to raise even more funds for the charity as the mascots are now on sale in the charity’s online shop.

Find out more about Sue’s 2.6 challenge here

Order your 2.6 challenge mascot here