Category: Living with nystagmus

Nystagmus Network logo.

Our New Year resolutions

… and our promises to you, the nystagmus community

Thanks to your support and generosity throughout 2019, the Nystagmus Network can confidently resolve and promise that in 2020 we will

ONE – provide even more support and information for everyone living with CN or AN, their friends and family and the people helping them to reach their potential and enjoy a better quality of life

TWO – raise even more awareness of this complex condition to bring about a better understanding of its affects and how schools, employers, companies and organisations can all help people living with nystagmus

THREE – foster and fund even more research into genetics, diagnostic testing and potential therapies so that nystagmus symptoms are better managed, outcomes improved and we can all hope for prevention and even a cure in the future

Thomas and Ben are #NystagmusStars

Today we have 2 #NystagmusStars for the price of 1! Their Mum says: “These are my two nystagmus stars, Thomas and Ben, who are confident, happy and loving boys.” 

To nominate your #NystagmusStar or to make a donation to help the Nystagmus Network support lots more people to reach their potential, please click here.

Thank you

Phoenix is a #NystagmusStar

Phoenix is 12. He has nystagmus and albinism. At a recent parents’ evening his teachers said he is exceeding most of his targets and they had nothing but praise for him. His Mum is very proud of him, too.

To nominate your #NystagmusStar or to make a donation to help the Nystagmus Network support lots more people to reach their potential, please click here.

Thank you

Ryan is a #NystagmusStar

Following a difficult birth, Ryan has nystagmus and is severely partially sighted. According to his Mum, he’s the funniest, most sensitive little man ever and whoever meets Ryan falls instantly in love with him, because he smiles from the start of the day to the end. She calls him “my number one star, my boy, my fighter and my son … Ryan.” 

To nominate your #NystagmusStar or to make a donation to help the Nystagmus Network support lots more people to reach their potential, please click here.

Thank you

Sarah is a #NystagmusStar

Sarah is an accomplished sports woman, mother and soon to be driver! She has never let nystagmus prevent her from trying anything she has wanted to do. Sarah is nominated by John who says: “She is my star.”

To nominate your #NystagmusStar or to make a donation to help the Nystagmus Network support lots more people to reach their potential, please click here.

Thank you

Oscar is a #NystagmusStar

Oscar sometimes finds it hard to understand why his nystagmus makes it so hard for him to do things, but he’s completely undaunted. He’s a keen fundraiser and always ready to help raise awareness, too. His Mum nominated him because she wants the world to know how amazing he is and, she says “for Oscar to know that he’s a superstar.”

To nominate your #NystagmusStar or to make a donation to help the Nystagmus Network support lots more people to reach their potential, please click here.

Thank you

Lyla is a #NystagmusStar

Nystagmus hasn’t stopped Lyla doing anything! She has just learnt to walk and loves saying Hiya! Her Mum says: “She’s the most fearless child who never gives up and I know this will help her in the future!”

To nominate your #NystagmusStar or to make a donation to help the Nystagmus Network support lots more people to reach their potential, please click here.

Thank you

Would your child like a German pen friend?

Thanks to our partnership with the German Nystagmus Network, we can now offer children and young people, who have nystagmus, living in the UK, the chance to make friends with someone in Germany.

If your son or daughter would like to send and receive postcards and letters, please complete the form below.

Through our partnership with the German Nystagmus Network we are offering UK families the chance to build friendships with German families. Each charity will provide the other with a list of children looking for pen friends. This list will include only the first name, age and town where they live. When a match is found we will contact the parents by email to ask for their permission to share their child’s surname and address with the other family. No contact details will be kept on file after the match is made.