In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” On Nystagmus Awareness Day itself a family shares their son’s amazing nystagmus story … “Our eldest boy, Sonny-John has nystagmus, and from as long as we can remember he has been … Continue reading How amazing is Sonny-John?
Category: Fundraising
Mike’s wiggly walk
On Nystagmus Awareness Day we are proud and delighted to announce that our newest supporter, Mike plans to walk the length of New Zealand to help find a cure for nystagmus. The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in a kayak, … Continue reading Mike’s wiggly walk
Join our Lottery
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! Please join sign up here.
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 … Continue reading Ben’s a true nystagmus hero
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 … Continue reading Benjy’s cake sale
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 … Continue reading Our fabulous Baker boy!
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 … Continue reading Get well soon, Sam
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 … Continue reading Our biggest ever investment in nystagmus research