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.


Find out more about our virtual get togethers here

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

Community Fund logo

The Nystagmus Network receives £8,000 from the National Lottery to increase our support services

The Nystagmus Network is delighted to have been awarded just over £8,000 in National Lottery funding to underpin its work supporting adults with nystagmus. The charity will use the funding to expand our support services to meet the greater needs of the nystagmus community during the pandemic and particularly to reach those who are isolated and would not normally turn to the charity for help.

With events and meetings postponed for now, the charity is continuing to run its support and information services during the current pandemic, by phone, email, on social media and via the website.

The new funding from The National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest community funder in the UK, means we will be able to increase our reach by offering our services to an ever wider nystagmus community.

There are many people living with nystagmus who have not needed our support until now, but in lockdown they have been experiencing additional problems with shopping, social distancing and spending time outside. They have also been feeling increasingly isolated. We can now let people know that we are here for them.

Sue Ricketts says: “We’re delighted that The National Lottery Community Fund has recognised our work in this way. Now, thanks to National Lottery players, we will be able to let far more people know we are here and can offer support and information on a whole range of things from accessing help with shopping locally to benefits advice and more.”

About The National Lottery Community Fund

We are the largest community funder in the UK – we’re proud to award money raised by National Lottery players to communities across England, Scotland, Wales and Northern Ireland. Since June 2004, we have made over 200,000 grants and awarded over £9 billion to projects that have benefited millions of people.  

We are passionate about funding great ideas that matter to communities and make a difference to people’s lives. At the heart of everything we do is the belief that when people are in the lead, communities thrive. Thanks to the support of National Lottery players, our funding is open to everyone. We’re privileged to be able to work with the smallest of local groups right up to UK-wide charities, enabling people and communities to bring their ambitions to life.


A group of parents and Nystagmus Network volunteers.

Fingers crossed

Today at the Nystagmus Network we have our fingers firmly crossed. Why? Because we want to say a big THANK YOU to all the lovely national lottery players who helped make our Parent Power project possible.

Thanks to our National Lottery Community Fund grant we’re able to run a series of free workshops for parents at 5 locations across England.

At each workshop, parents and carers of children with nystagmus are learning about the legal rights of their children to support in school and, just a importantly, how to access it.

Want to join one of our workshops? We’re now taking bookings for London and Cambridge. Please click the links to apply.

The picture shows parents and Nystagmus Network volunteers with their fingers crossed at the first Parent Power workshop in Southampton earlier this year.

Community Fund logo

Parent Power comes to Southampton

Parent Power, funded by the National Lottery Community Fund


The Nystagmus Network is now inviting parents and carers to attend the first of our Parent Power education workshops.

Location:      Southampton

Date:            Saturday 12 October

Time:            10am to 2pm

Lunch will be provided. This is an adults only event.

The aim of the project is to empower parents and carers with legally based information on how to advocate for their children with nystagmus to ensure they receive appropriate support across all stages of education.

Led by our 2 IPSEA trained education advocates, delegates will learn about the rights of their children under law and receive advice on how to access the range of SEN support available to visually impaired children, including an explanation of the EHC plan process.

The workshops will also cover practical information on exam access arrangements, reading resources and transition plans. Content will be tailored to the age and educational stage of your child.

Following the formal input of the day, local parents and carers will have the opportunity to network with each other and also meet local adults living with nystagmus.

There will be more news about 4 future dates and locations across England very soon.