Please join the Nystagmus Network Lottery for your chance to win £25,000 every week! We receive 100% of the profit which goes to support everyone affected by nystagmus, raises awareness of this complex condition and funds research!
Congratulations, Tim!
Nystagmus Network trustee, Tim Cuddeford, ran the London Vitality 10 k on Bank Holiday Monday to raise funds for the charity.
Tim said: ”
“I did it in 00:58:48, not quite catching Sir Mo Farah.”
Tremendous effort, Tim. We’re all so proud of you!
You can still sponsor Tim by visiting his Justgiving page, here.
Ben’s a true nystagmus hero
Ben is doing a ‘wobbly cycle ride’ this Saturday, 4 May. He’ll be riding 35 miles for his brother, who has nystagmus, to raise money for the Nystagmus Network and to achieve his Duke of Edinburgh award.
Here’s what Ben says:
“I am Ben and I’m 13 years old. I am doing this cycle ride for the volunteering element of DofE and for my little brother because he has got nystagmus and it is hard for him to see. Cycling 35 miles in a day will be very challenging for me but this is nothing compared to the challenges my little brother faces with his vision impairment every day.”
Please sponsor Ben if you can by clicking this link.
Thank you
Benjy’s cake sale
A big thank you to everyone at St John the Baptist junior school in Hampton Wick (Richmond upon Thames) for nominating Nystagmus Network as their chosen charity for their recent cake sale. Coordinated by Benjy Greenwood and Year 6, the cake sale raised an amazing £316.46 and sold over 300 cakes in a 15 min ‘feeding frenzy’ at the end of the school day. Well done, Benjy!
Want a T-shirt like Benjy’s? Head over to our online shop.
London marathon 2020 ballot open NOW
If you would like the opportunity to run the London marathon 2020 for the Nystagmus Network, please enter the ballot TODAY.
Please click here for details. Good luck!
Our fabulous Baker boy!
Steve Baker, who’s Twitter handle is, appropriately, @fabbakerboy, will be running the London marathon this Sunday for nystagmus research at Moorfields.
Not content with just one marathon, Steve, who has congenital nystagmus himself, is also taking on this year the QE Marathon in March and the North Downs Way 50 mile ultramarathon in May.
Steve is fundraising for Moorfields Eye Charity and every pound he raises will go into a specially dedicated ‘nystagmus research’ pot .
Steve says: “Moorfields Eye Hospital is an internationally renowned centre of excellence when it comes to pioneering eye treatment. If you have anything seriously wrong with your eyes Moorfields is the place to go.
“I started going there some 38 years ago when I was just two years old and continued to go every year until I was 16. I have a condition called nystagmus, which is when the eyes shake. This is a rare condition and most people who suffer from it are registered blind.
“However, I was fortunate enough to be able to see OK with the use of glasses. These glasses would be prescribed every year at the end of my annual visit to Moorfields, which would involve hours of testing on my eyes.
“Throughout this time my eyes slowly improved, but not enough for me to comfortably pass a sight test for driving.
“Then in 2001, after I’d finished education, I had the opportunity of undergoing a pioneering operation at Moorfields to correct the squint in my eyes and reduce the nystagmus. Following the operation my eyes went from a 17 degree squint to just 1 degree. A 1 degree squint is negligible and barely noticeable. The effect on my eyesight was life changing – I could now see more than well enough to drive and wear contacts if I so chose. Having the chance of being able to drive gave me the confidence to become a journalist, where driving is almost a prerequisite, and set me on the road for being the writer I am today.
“My eyes continue to improve year on year. I owe a huge debt of gratitude to Moorfields and would love to help them save the sight and change the lives of many more people.”
A highly commendable ambition, Steve. Thank you!
You can sponsor Steve, here.
Get well soon, Sam
Sadly Nystagmus Network trustee and London marathon runner, Sam Jones has been forced to pull out of Sunday’s run due to a knee injury.
Sam was all geared up to run his third marathon to raise money for the charity founded by his mother, Vivien, shortly after his birth and nystagmus diagnosis in 1984. Read all about Sam in our Focus newsletter, here.
A seasoned runner, Sam has unfortunately been plagued by a recurring knee injury, which, despite rest and repeated physiotherapy sessions, is refusing to allow him to cover the full 26 miles.
Having won his 2019 place in the ballot, Sam had been training and fundraising hard. His sponsorship total stands at well in excess of £1,000 and his supporters have generously pledged that the money will still come to the charity where it will go towards nystagmus research.
Nystagmus Network members, Sam’s fellow trustees and staff wish Sam a full recovery and thank him wholeheartedly for his dedication.
If you would like to pledge your support for Sam, please visit his Virgin Money Giving page, here.
Our biggest ever investment in nystagmus research
Thanks to the generosity of our members, fundraisers and supporters and our longstanding partnership with Fight for Sight, the UK’s leading eye research charity, the Nystagmus Network is delighted to be able to announce our biggest ever funding commitment to nystagmus research.
At the Nystagmus Network nystagmus research workshop in September 2018, charity trustees asked the UK research and clinical teams what was the single most meaningful way the charity could support the further development of nystagmus research. Their answer was to fund a post doctoral post. They asked, the charity listened.
Vivien Jones, chair of the Nystagmus Network’s research committee, said: “We are delighted to be joining Fight for Sight in funding a new research doctorate post for nystagmus. This means we will be bringing new expertise into the field, which we are very pleased to do. It is the biggest investment we have made in research and we are grateful to all those who fundraise for us for helping to make this happen.”
Details of the new funded post and application process are below:
Call for the Fight for Sight / Nystagmus Network Project Grants 2019-2020
Fight for Sight and the Nystagmus Network are pleased to offer a joint Project Grant award for up to £250,000 over three years. The call is open to both clinical and non-clinical research scientists wishing to lead a research project to address sight loss associated with nystagmus. The aim of the call is to build research capacity of post-doctoral researchers.
Nystagmus is a complex visual impairment, characterised by involuntary eye movements, affecting focus and depth perception. Currently there is no cure available.
The call for preliminary Abstract Applications opens in early May 2019 via our online system grants.fightforsight.org.uk. The award is highly prestigious made on a fully competitive and peer reviewed basis. The call follows a rigorous two-stage application process. For more details of the assessment process please visit our grant making process.
Eligibility:
• Applicants must be affiliated with UK academic or medical institutions but the research can be undertaken in the UK and/or overseas.
• Applicants must have a contract of employment which extends beyond the termination date of the award
• Research addresses visual impairment associated with nystagmus
Deadlines:
The deadline for Abstract Applications is 11 July 2019. For shortlisted applicants the closing date for Full Application submissions will be 21 November 2019. The successful applicants of the 2019-2020 grants round will be notified in March 2020.
Contact Us:
For any queries relating to your proposal please contact Fight for Sight Fight for Sight: [email protected]
Celebrating our loved ones
When a loved one dies, family and friends left behind need the chance to say goodbye, honour their memory and look for meaning in the death by remembering their achievements and celebrating their life.
The Nystagmus Network is grateful to those thoughtful families who turn to the charity at these sad times to raise an In Memoriam fund in the name of their loved one to help us continue our important work: providing support and information, raising awareness of the condition and funding research.
If you would like our support to remember your loved one in this way, you can contact us at any time.
THANK YOU
Introducing Neill
Neill Mison is an IT consultant who has recently rediscovered his love of and talent for painting and drawing. Neill now styles himself as ‘the visually impaired artist’ and is enjoying some considerable acclaim for his impressionist style. The subtle colouring and fine detail of his paintings is particularly surprising since Neill has ocular albinism and nystagmus.
Neill is also a keen runner. He recently completed a Nottingham fun run, in his Nystagmus Network T-shirt, as a warm up to his part in the Manchester marathon this weekend.
You can sponsor Neill, here.
You can read more about Neil, his vision and his art, here.