Please vote for Ben

Ben Haynes is a talented young musician who just happens to have albinism and nystagmus. Ben has entered a music competition and needs your vote. We’ll let Ben explain …

Hi everyone. I’m a self employed musician from Nottingham with Albinism and Nystagmus. I performed a few songs at the Nystagmus Network Open day in Newcastle back in 2015.

I was hoping to ask you all a favour …

So I’m in this competition called Future Sound of Nottingham. I’m one of twelve semi-finalists. The winner gets to play Rock City (iconic venue) and then potentially, Splendour festival. Splendour is one of the biggest events in Nottingham. Here’s a link to the song I submitted.

In fear of sounding like a politician, do I have your vote??

VOTE HERE

You will be asked to provide both your email and mobile number. This is to ensure people don’t vote multiple times.

Once you’ve voted, please share with friends and family. Tagging people on social media is a great way to spread the word.

Thank you for your support X

You could win £450 for the Nystagmus Network

SMALL CHARITY WEEK begins on Monday 18 June. If the Nystagmus Network is your favourite small charity, why not enter the Facebook, Twitter or Instagram competition to help us win £450?

How to enter:

Take a photo of yourself holding up your Small Charity Week poster that reads:

“I love Nystagmus Network because (and say why you love the charity)”.

Then simply post it to either Twitter, Instagram or the Small Charity Week Facebook page, depending which competition you want to take part in. Make sure you include the #ILoveSmallCharities hashtag when you post your photograph.

Thank you for your support in SMALL CHARITY WEEK!

You can download your poster here.

Manchester half marathon places available

Would you like to run the Manchester half marathon this October to raise money for the Nystagmus Network?

The race takes places on Sunday 14 October. It starts and finishes by the iconic Emirates Old Trafford, Lancashire Cricket Club.

The event boasts one of the fastest, flattest and friendliest courses on a completely closed road route, through the streets of Greater Manchester This makes it perfect for first time charity runners or those looking for a PB alike.

All we ask in return for your free place is that you:

  • undertake to raise at least £100 in sponsorship
  • set up a Justgiving page for your sponsors
  • wear your free Nystagmus Network running vest

If you’d like to apply for a place, please complete the form below. Thank you.

 

Sam to run London 10k for the Nystagmus Network

Sam Jones, Nystagmus Network trustee and runner, introduces himself.

I was born in 1983 with Cone Dysfunction and Nystagmus. Because of me, my mother, Vivien Jones, founded the Nystagmus Network. Next year I’ll be running my third London marathon to raise funds for the charity, so I’ve decided to run the London Vitality 10k and the Chase the Sun this year, in preparation for 2019.

I have Cone Dysfunction and Nystagmus, which means fairly strong sensitivity to light (my eyes are secretly blue but I wear brown lenses!), very short sight and occasional oscillopsia (the world shakes about). I’m completely colour blind, too.

I take my running seriously. I finalised the training vision, finessed the training strategy, drafted the training implementation plan and gave a bit of thought to the training work breakdown matrix. I also bought myself a fitbit. Then I finally got out to do some running!

It’s a real privilege to be running for a cause so close to my heart and I’ll be giving it my all on the day.

To sponsor Sam, please visit his Justgiving page. Thank you.

 

 

Nystagmus Network article published

To achieve our objective of raising greater awareness of nystagmus, the charity publishes articles from time to time on different aspects of the condition. The article we submitted for publication most recently is entitled Wobbly Eyes and explains nystagmus in language a young child can understand. The text is adapted from our free to download publication with the same title. Download your copy here.

Sponsors sought for Open Day 2018

The biggest nystagmus event of the year takes place on Saturday, 29 September in Birmingham. This is our annual Open Day, where 200 nystagmus families get together to talk about research, education, support, assistive technology, mobility, education and general day to day living with a visual impairment. The Nystagmus Network is seeking sponsorship from commercial organisations. If you’re interested and would like to find out more, please contact us today.

Priority booking for free tickets to charity members opens at 12:00 on Thursday, 28 June, with any remaining tickets going on general sale from 26 July.