Category: Fundraising

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 in the open and the Big Blind Walk

On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?

On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.

Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

People stand at a clinic reception holding Nystagmus Network balloons.

Nystagmus Awareness Day – for clinics

Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.

We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.

For those organising a fundraising event, we also have posters – and don’t forget your bunting!

If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus Awareness Day – for sports clubs

Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please organise a fun sports day or a try out session at your local club or recreation ground and invite everyone to come along. We have free flyers to help you publicise your event. There is even a free bunting template. But if you would like some balloons, you will need to contact us, please.

Last year, with the ‘nystagmus big swim’, we proved that people with nystagmus can be amazing swimmers. Our nystagmus water babies also helped us raise a lot of money through sponsorship. You can help us achieve the same success this year.

Thank you for your support.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus in the garden

To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!

Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.

If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.

If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Join Easyfundraising.com and raise donations for the Nystagmus Network every time you shop online

We all shop online, but did you know that, by signing up with Easyfundraising.com you could be raising money for the Nystagmus Network – and it doesn’t cost you a penny. You could also take advantage of some great deals.

We already have a growing group of shoppers collecting a few pence, or even a couple of pounds, for us every time they do their weekly shop online, book their holiday or order their next good read. You can use the site to shop with all your favourite online retailers.

So please join Easyfundraising.com today and we can all watch those pennies add up!

Thank you to Mike and Studley Wood GC

Nystagmus Network trustee and golfing enthusiast, Peter Greenwood, traveled to Studley Wood Golf Club in Oxfordshire earlier this week to receive, on behalf of the charity, a cheque for £4,300. The money had been raised during the year at various events by club members, their friends and families after club captain for the year, Mike Lawton, nominated the Nystagmus Network as his captain’s charity of the year. Mike’s daughter, Lucie, has nystagmus and is also a big Nystagmus Network fundraiser. She ran the London marathon for us last year.

Huge thanks to everyone at Studley Wood GC, and especially to Mike and Lucie.

Friday Fundraisers on Facebook

Every Friday on our Facebook page we celebrate the achievements of the week’s top fundraiser, feature the story of one of our upcoming fundraisers or signpost you to fabulous and fun fundraising opportunities. So please join us every Friday on Facebook and help us say a huge thank you to all our wonderful fundraisers.

Our fundraisers make it possible for us to continue our important work supporting everyone affected by nystagmus, providing information, raising awareness and funding research. We cannot do any of this without them.

Last week’s Friday Fundraisers were Jemma, Jo, Fergie and Jorja. Please sponsor them if you can and then go and find out about this week’s Friday Fundraiser.

Thank you!

Could you do something extraordinary for nystagmus?

In 2018 we’re looking for people who want to do something amazing. We’ve got lots of opportunities lined up and we’re ready to give you masses of support to follow your dream. So whether it’s a mountain trek to Kilimanjaro you fancy, a London to Paris bike ride or something a bit nearer to home, we’ve got the bucket list adventure for you.

If personal challenges are what floats your boat, try this.

Or if sky dives are more your thing, click here.

To talk to us about how we can achieve your personal goal together and fundraise for the charity at the same time, please contact us here.

The Nystagmus Network supports Julian’s Big Blind Walk

Julian Jackson lost his sight in 2010 as the result of an inherited retinal condition. Since then he has become a visual impairment champion. He has worked with a leading eye research organisation and, through his own social enterprise, VisionBridge, campaigned to bring sight loss and the need for more research to public awareness. His work has gained momentum and he is now partnered with researchers, eye health professionals and members of the visually impaired community across the UK.

What is the Big Blind Walk?

Julian is seeking to raise awareness of and funding for sight research, for too long seen as a ‘cinderella’ branch of medicine. He has previously tandem cycled from John O’Groats to Land’s End, but this year he plans to walk back along the entire 1,000 mile route, from the bottom to the top of the UK. He thinks it will take him around 7 weeks.

He will set off from Cornwall on Sunday 29 April, when the BBC1 Countryfile team will be there to film him. If all goes to plan, Julian hopes to arrive in the far north of Scotland by around 22 June.

Why is the Nystagmus Network supporting Julian?

The Nystagmus Network promotes and funds research into nystagmus, but we are only a small charity with limited resources. If we support Julian to raise the profile of vision loss and the need for research, as well as a large pot of money which eye sight researchers can bid for, we can all benefit.

Richard Wilson OBE, Chairman, Nystagmus Network, writes: “The Nystagmus Network is delighted to support Julian and his Big Blind Walk, because we believe wholeheartedly in his mission to raise awareness of sight health and foster innovative research.”

How can I take part?

In support of Julian’s endeavour, the Nystagmus Network is asking members of the nystagmus community simply to get out there and cheer Julian on. If you live close to Julian’s route, you can follow his interactive map to find out when he’s passing by. Why not walk a section with him? He would be very glad of the company.

If you’re planning to walk with Julian, please let us know and we will send you a Nystagmus Network T-shirt to wear. It will make it easier for you to meet other people affected by nystagmus in your area, help Julian publicise his walk and raise awareness of nystagmus, too.

A thank you from Julian

“I’m so grateful to the Nystagmus Network for not only supporting my Big Blind Walk to improve awareness and understanding of the social, economic and psychological impact of sight loss amongst a growing number of the UK population, but also in promoting and raising money for eye research, which I believe is one of the most underfunded areas of medical research and certainly one of the best kept secrets in the UK!”

Thank you for your support.