Both Claire and her young son, Zac have nystagmus. In 2019 Claire decided she was going to do a sky dive for the Nystagmus Network. Postponements because of the weather and then again this year because of lockdown, meant Claire was waiting nervously nearly a whole year before she could make her leap. But she … Continue reading Thank you, Claire
In 2020 Ahrian offered the Nystagmus Network her services as a volunteer. So far she has designed the logo for the @NystagmusYouth Instagram account and the new T-shirt for our 19-21 challenge. Ahrian has nystagmus herself and wanted to give back something to the nystagmus community. She says: “I was born with nystagmus and grew … Continue reading Thank you, Ahrian
We’ve all had to give up so much this year and we’ll all be pleased to make it to the end of 2020. But before we do, the Nystagmus Network is celebrating 12 people who’ve given back so much to the nystagmus community in 2020. We’ll be telling their 12 stories in the run up … Continue reading #GiveBack2020
Nystagmus Network supporter, Phil Morris organised a charity cricket match on Sunday 30th June 2019. The teams were Phil’s own Hendrefoilan Hedgehogs versus an Invitational 11 from a number of other teams around the west of Swansea. A great game was had by all with a post match BBQ, cake stall and raffle. Due to … Continue reading Howzat?
The Nystagmus Network would like to say a huge thank you to Shirley Pennington, her family, friends and local Shropshire community. Shirley recently organised an auction of promises to raise money for the Nystagmus Network. Shirley’s event raised a phenomenal £16,625! The auction was in part a celebration of Shirley’s son, James’s marriage to Rhiann … Continue reading Thank you, Shirley
As ‘wobbly week’ draws to a close for another year we just wanted to thank everyone for making Nystagmus Awareness day 2019 such a success. Thank you to our fundraisers, event organisers and all the parkrunners. Thank you for your amazing nystagmus success stories, your videos, photos, your donations, presentations, displays and quizzes and thank … Continue reading Thank you – you are amazing
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
Huge congratulations and thanks to everyone who turned out on a very blustery Sunday morning to walk 4 or 14 miles around the streets of London to raise money for pioneering nystagmus research at Moorfields and UCL. The final total is still being counted, but we can report that together you have so far raised … Continue reading Eye to Eye – you smashed it!
Our final advent calendar gift is something we offer every day of the year. Thank you to all our members, fundraisers and supporters who make it all possible. Happy Christmas!
365 general enquiries answered information and support line available 24/7 5,000 nystagmus leaflets in clinics and hospitals 75 families calling on our education advocacy service 3 research projects funded, with a further £30,000 for research in 2019 Bronagh and Susan – you helped make that happen! Today the whole nystagmus community says thank you to … Continue reading #YouMadeItHappen – Bronagh and Susan