Thank you, Claire


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

Thank you, Ahrian


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

Thank you, Shirley


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

Thank you – you are amazing


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

Eye to Eye – you smashed it!


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!

#YouMadeItHappen – Bronagh and Susan


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