Nystagmus Network on the radio

Read about the Nystagmus Network's BBC Radio 4 charity appeal on 11 August and how this has raised awareness of the eye condition.

Nystagmus is a condition where your eyes make rapid, repetitive, uncontrolled movements, and the Nystagmus Network is an organisation that advocates for a world in which nystagmus is consistently and fully understood and supported in all environments.

The Nystagmus Network was delighted to be granted a BBC Radio 4 charity appeal. The appeal was broadcast on Sunday 11 August. It was an amazing opportunity for our charity to raise awareness of our cause and the work we do among listeners worldwide. Another benefit is, of course, to encourage some much-needed donations. And then there are the lovely phone calls from people who are so delighted to have heard the word nystagmus on the radio.

We asked actor, singer, musician and children’s author, Gerard McDermott to present our appeal. Gerard was born with nystagmus and was happy to talk about his experiences at school and later. But that wasn’t always the case.

Throughout his school days Gerard hid the fact that he couldn’t see very well, even taking his glasses off at play time. His teachers didn’t realise he couldn’t see the board or read the textbooks so there was no support put in place.

Later, his dream came true when he won a place at drama college. He still hid his poor eyesight, making great use of the photocopier to blow up his scripts. These days he uses a tablet to enlarge everything.

Despite his initial shyness, Gerard is now happy to talk about nystagmus and serve as an ambassador for the Nystagmus Network. Everything changed when, in his fifties, he came along to one of the charity’s events. For the first time he felt able to speak openly with other people about nystagmus. 

During the appeal, Gerard also shared Jackie’s story. Unlike Gerard, Jackie has only recently acquired nystagmus following 40 years with no vision problems. It has turned her world upside down. She’s had to give up a lot of things she used to enjoy, like tennis, and she’s still coming to terms with her new life. But like Gerard, she’s also found comfort and support through Nystagmus Network meetings and events. She’s now a regular and says it’s her best care plan.

As a charity supporting adults and children living with both congenital and acquired nystagmus, we felt it was important to include both types in our appeal story. Although there are some obvious similarities, like poor vision and lack of depth perception, the impact of the two conditions can be very different, even from one person to another.

I would encourage any charity to apply for a BBC Radio 4 charity appeal. You get precisely 2 minutes 40 seconds of airtime and a very limited word count for your script. But Gerard did an amazing job. And the whole experience was such fun!

As I write, bundles of cheques and online donations are still coming in. This means we can confidently plan to continue to run our support services and organise the events we know are so important to our beneficiaries. Lots of the donations are accompanied by a letter or phone call from people who have never heard of the Nystagmus Network before, but, like Gerard and Jackie, feel that they’ve finally found their community. That’s the power of nystagmus on the radio!

Gerard kindly recorded a short video message about the appeal. You can watch and listen on our YouTube channel here: https://www.youtube.com/watch?v=KpHPS7viXJo 

There’s more information on our website here: https://nystagmusnetwork.org/a-bbc-radio-4-appeal/ and you can listen to our appeal on demand on BBC Sounds here: https://www.bbc.co.uk/programmes/m0021xd1

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