Don’t forget that, throughout June, in the run up to Nystagmus Awareness Day 2019, we’ll be sharing all your amazing nystagmus stories. So, if you’d like us to feature your success or achievement, or your child’s, or nominate someone you know, please send your story and photo to: [email protected].
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.
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.
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]
The Nystagmus Network will once again be hosting a UK nystagmus research conference in 2019.
Following the success of last year’s event, attended by research and clinical teams from the Universities of Cardiff, Sheffield, Plymouth and Southampton and from Moorfields Eye Hospital and Fight for Sight, the charity will be funding a further event with a view to bringing about ever closer collaboration between teams and seeking out new and collaborative ways to make rare resources stretch even further.
As testing and detection become ever more sophisticated, it is hoped that outcomes for babies born with nystagmus will continue to improve, with effective treatments, prevention and even cure moving closer. In addition, therapies and interventions for young people and adults with congenital and acquired nystagmus continue to be explored.
This year’s conference takes place at the University of Cardiff in September. Delegates from across the UK have been invited and the charity is delighted to announce that representation from Leicester, London, Plymouth, Southampton and, of course, Cardiff is already confirmed. Clinicians, researchers and academics will be joined by Research Manager at Fight for Sight, Neil Meemaduma and those Nystagmus Network trustees who sit on the charity’s research committee.
Research teams will also attend the Nystagmus Network Open Day in Cardiff on Saturday 28 September, where they will be available to speak with delegates about their work.
The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus.
Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike.
Nadine is a friend of the Nystagmus Network and previously contributed an article about her daughter’s nystagmus for our fortnightly newsletter, Focus, in June 2017. Read her article in full by clicking here.
Since then she has continued to parent her daughter, who also has Chromosome 18q-, whilst writing her blog, Caring in the Chaos.
Nadine will be joining us at Open Day 2019 on Saturday 28 September. Delegates will have an opportunity to meet her and chat with her about bringing up a child with nystagmus and purchase a copy of the book, signed by the author.
The Nystagmus Network’s Sue Ricketts has provided an endorsement for the book:
“Can I tell you about Nystagmus … highlights a much misunderstood condition. Seen from the family’s perspective, the description of the way nystagmus affects the daily life of a young child will be informative and reassuring for other parents.”
The book is available to order directly from the publishers. Please click here for details.
Members of the Nystagmus Network can purchase the book at a generous 25% discount. Please use the voucher code in your special member email.
The first THREE new members to sign up today will receive a copy of the new book ABSOLUTELY FREE as part of their membership package.
The Colson family are serious about fundraising for nystagmus research. Sisters Laura and Ellie are taking part in the Peak District Ultra Challenge this summer, their first ever ultra marathon, whilst their brother, Ryan, CEO of the family firm, Colson Skips, is getting his entire workforce right behind them.
If you’d like to sponsor Laura and Ellie, you’ll find their Justgiving page here.
You can read Ryan’s story online, here.
The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year.
Why raise awareness?
We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition.
New for 2019
We’ve revised and updated two free to download PowerPoint presentations.
Introducing Nystagmus or Wobbly Eyes
This presentation is aimed at children in school or pre-school and explains how congenital nystagmus affects young children. Click the link to download Introducing Nystagmus or Wobbly Eyes
Introducing Nystagmus
This presentation is designed to be shown on a screen in reception at a workplace, in clinic or in a hospital waiting room and explains both congenital and acquired nystagmus and how these 2 conditions affect children and adults. Click the link to download Introducing Nystagmus
Push Yourself Further – 10 great events in 2019
New for 2019 – the Nystagmus Network has partnered up with Action Challenge to bring you 10 fundraising challenges.
Ellie and Laura have already signed up. What’s stopping you?!
Are you a regular walker and new to endurance events? Perhaps a seasoned trekker looking for testing adventures? Or even a marathon runner wanting to ‘up’ your distance? Whether it’s along magnificent coastal scenery, or in stunning open countryside, there’s an Ultra Challenge for you.
Walk, Jog or Run at YOUR pace on the Ultra Challenge Series event of your choice. Join 20,000 others in 2019 of all ages and experience for an unforgettable Challenge. It will be rewarding, fun, and absolutely achievable with your resolve and determination alongside first class support.
Push yourself further – 100km Full Challenge, with Half and Quarter options also available.
CHOOSE YOUR CHALLENGE:
Isle of Wight Challenge – 4/5 May 2019 Around the coastal path…
London 2 Brighton Challenge – 25/26 May 2019 Iconic route from Capital to Coast…
Jurassic Coast Challenge – 8/9 June 2019 The UK’s best coastline…
Cotswold Way Challenge – 29/30 June 2019 Tough rolling hills and stunning viewpoints…
Peak District Challenge – 13/14 July 2019 A looped route to and from our basecamp in Bakewell…
Chiltern Challenge – 27/28 July Take on the Ridgeway through the Chiltern hills …
South Coast Challenge – 31 Aug/1 Sept 2019 Seven Sisters and South Downs…
Thames Path Challenge – 7/8 Sept 2019 Take on the historic towpath… PLUS – Thames Bridges Trek 25km
The North Downs Challenge – 28 September Festival style season-finisher…
You’ll get full support and hospitality all the way, leaving you to focus on your challenge!
www.ultrachallenge.com [email protected]
CHOOSE YOUR FUNDRAISING OPTION:
Charity Sponsorship – pay a small registration fee and do lots of fundraising!
Mixed Funding – pay a higher contribution to the cost of your place and fundraise to a more achievable target.
Find out more about the route, support, hospitality and choose your Challenge at www.ultrachallenge.com
The Nystagmus Network UK sends huge congratulations to Hanna and her fellow trustees for the successful launch, at the end of 2018, of the German Nystagmus Netzwerk.
Our two organisations are working closely together to ensure that information and support is available for German speakers everywhere, affected by nystagmus.
To this end, today we celebrate the publication of ”Wackelige Augen”, the German translation of our very own booklet for children, Wobbly Eyes.
Hanna came along to our Open Day in September 2018. You can read her report, here.
To contact the German Nystagmus Netzwerk, email them here or find them on Facebook.
