Emma at her fundraising stall wearing a face mask.

Trustees publish their annual review

The Annual Report 2020 by trustees of the Nystagmus Network is now lodged with the Charity Commission and available to the public to read.

2020 was undoubtedly a most challenging year for the nystagmus community, the Nystagmus Network, people and services everywhere.

Despite the challenges of Covid-19, however, Chair of Trustees, Tim Cuddeford is pleased to report that 2020 was another positive year for the Nystagmus Network, thanks to the flexibility, innovation and resourcefulness of charity staff, volunteers, trustees and supporters. Thanks go, too, to National Lottery Players. Funding from the National Lottery Community Fund helped support the charity through some very difficult months.

The Nystagmus Network has been funding nystagmus research since the 1990s and continued to do so in 2020, with a new PhD post awarded, bringing another expert to the table, and another small grant award, both thanks to the charity’s funding partnership with Fight for Sight.

To find out how the charity adapted and developed to meet the changing needs of the nystagmus community during the pandemic, whilst continuing to fulfil its charitable objectives of support, awareness and research, you can read the full report by following the link below.

Read the Annual Report 2020 here

Read annual reports since 2015 here

A Nystagmus Network scented candle held in someone's hands. The candle is not lit.

Special edition scented candle raises funds for the Nystagmus Network

This lovely scented candle is specially created for the Nystagmus Network by Oli at No. 14 The Wick to celebrate Nystagmus Awareness Day 2021. The scent is Bergamot and Sage using a blend of essential and fragrance oils. 

The oils have been chosen for the following aromatherapy attributes.

BERGAMOT – Uplifting and refreshing. Reduces stress and anxiety

SAGE – Stimulating and soothing. Helps clarify the mind and promotes attentiveness

Oli says: “I wanted to play on the meaning of ‘sage’ too. As in, ‘someone who is wise and has attained this wisdom through experience’. I felt this embodied the charity and all that is stands for in sharing it’s knowledge, advice and support to its members. 

“Clarity is something that the charity provided for me when our children were first diagnosed with nystagmus and the support provided certainly helped us through some difficult or challenging times.

“Most of all I wanted to capture a fragrance that was uplifting and positive which is something we always feel when we meet our Nystagmus Network family. Knowing we are not alone and that there is advice or support from a ‘wise sage’  if needed.”

Love and light, Oli x

Product Details:

220g soy wax candle

Approx. 40 hour burn-time

Matt White glass container

Order your candle here

Sorry, but we can only ship candles to UK destinations

UK governemtn leaflet about the local offer

Do you use your local offer?

Since 2014 all UK local authorities are required to put information about services for families with disabled children in a special web page called the Local Offer.

Have you found yours? Do you use it? Is the Nystagmus Network listed as a support service?

We’re trying to make sure that everyone receiving a diagnosis of nystagmus finds their way to support and information from the Nystagmus Network.

Please contact us to let us know how your Local Offer is doing.

Thank you

Watch his video to find out more

Tim Pearce

Thank you, Tim

Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children.

Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky preview, but no spoilers, for his follow up book, due out later this summer. He is currently writing book three in the series.

When asked what spurred him to write, Tim said he has always loved being creative and has a passion for writing strong characters. He also loves a plot twist and tries to cram in as many as he can to keep his young readers on the edge of their seats.

The Nystagmus Network children’s story

Tim then led the children taking part in the online workshop to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.

Order Tim’s book on Amazon Smile here

Inspired by Tim?

Raindrops story writing and drawing competition for children

What do raindrops mean to you? What do they smell, sound, feel or taste like? What do they make you think of? How do they capture your imagination?

The Nystagmus Network Raindrops competition celebrates the wonderful creativity of children’s writing and illustration.

The best stories and drawings will be published in a special book which will be available to purchase from September 2021.

How to enter

The competition is open to all children with or without nystagmus, aged 5 to 14 years. There will be winners in each age category.

Download the competition rules and an entry form here

Completed entries (entry form plus story and / or drawing on Raindrops writing paper or drawing paper) should be emailed to [email protected] Deadline: 23:59 on Saturday 19 June

Prizes and a book

There will be some fabulous prizes for the winners of each age category, including books signed by your favourite children’s author. As many stories and drawings as possible will be published in a book which will be available for sale from September.

Get sponsored

If your little one is a reluctant writer, why not encourage them by asking friends and family to sponsor them 1p a word?

Download a Raindrops sponsor form here

The logos of Fight for Sight and the Nystagmus Network

Nystagmus research grant funding open for applications

The next round of small grant awards for nystagmus research is now open for application. The grant, funded jointly by Fight for Sight and the Nystagmus Network is worth up to £15,000.

The Fight for Sight / Nystagmus Network Small Grant Award One award to support clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.

Applications close on 5 August.

Find out more here

A woman undergoing a sight test.

Nystagmus news for eye care professionals

The Nystagmus Network now produces a digital newsletter for Dispensing Opticians and Optometrists. The first edition has just been published, bringing nystagmus news, stories and information directly to high street and community practices.

Read the newsletter and subscribe here

A child takes part in an online writing workshop with author, Helen Rutter. On his desk is Helen's book 'The Boy Who Made Everyone Laugh'.

Children’s writing workshops this summer

Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz!

Never mind. There are two more workshops still to come.

The first is with ‘Secret Agent Striker’ author, Tim Pearce and the second is with children’s writer and illustrator, Claire Alexander, author of ‘A Little Bit Different’.

Meet Tim Pearce

Children aged 7 years and up are invited to join a FREE interactive workshop with Tim Pearce, author of Secret Agent Striker. Tim will share his passion for writing, his inspiration and what he plans to write about next. You can send your questions for Tim in advance to [email protected]

Monday 10 May: 4:30 to 5:30pm

Book the Zoom workshop with Tim here

Order Tim’s book on amazon Smile here

Meet Claire Alexander

The Nystagmus Network welcomes children aged 7 years and up to a FREE interactive online workshop with Claire Alexander, author of A Little Bit Different and her new book A Little Bit of Courage. Claire will share her passion for writing and illustration her inspiration and what she plans to write about next. You can send your questions for Claire in advance to [email protected]

Thursday 17 June: 4:30 to 5:30pm

Book the Zoom workshop with Claire here

Order Claire’s books on Amazon Smile here and here