Our wobbly week competition


It’s wobbly week! And it’s Nystagmus Awareness Day this Thursday, 20 June. We want to raise as much awareness of nystagmus as possible and make sure that everyone has a chance to take part, so today we’re launching our wobbly week competition: Nystagmus is … Following on from Roger’s amazing description of his nystagmus, we … Continue reading Our wobbly week competition

How amazing is Mike?


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?” For those of you who don’t know Mike, he’s a hugely valued member of the Nystagmus Network team. He’s our volunteer benefits adviser and the fount of all knowledge when it … Continue reading How amazing is Mike?

How amazing is Phebe?


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?” Today Phebe tells her own nystagmus story. “My name is Phebe and I am graduating tomorrow from the 5th grade. I love to play soccer, lacrosse, tennis and ski. I also … Continue reading How amazing is Phebe?

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.

Why we’re helping people with albinism to stand strong


A guest post from Roselle Potts, Chair of the Albinism Fellowship on International Albinism Awareness Day 2019. ‘The prejudice and struggles facing people with albinism are sadly as present as ever in 2019… ‘International Albinism Awareness Day is with us again on 13 June and it’s a chance to reflect on the progress that has … Continue reading Why we’re helping people with albinism to stand strong

How amazing is Ursula?


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?” Today Ursula shares her own amazing story. Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children … Continue reading How amazing is Ursula?

Let’s go VI skiing


With thanks to our friends, the Outspan Rebels VI ski team, we’re offering you the chance, once again, to try out skiing for yourself at Snozone Milton Keynes. Children, young people and adults all welcome. Bring along your fully sighted family members, too. Please see the poster for full details. All enquiries, please, to outspanrebels@gmail.com

Parent Power – our new project, funded by the Community Fund


The Nystagmus Network is delighted to announce that we have been awarded funding by the Community Fund for a brand new project, called Parent Power. The aim of the project is to empower parents and carers to advocate for their children with nystagmus to ensure they access appropriate educational support in school or early years … Continue reading Parent Power – our new project, funded by the Community Fund

Our Manchester Event


Manchester Royal Eye Hospital is holding a Nystagmus Awarenessafternoon filled with fun activities for children and young people, as well asinformation for parents, carers and families of children with nystagmus.Guests from the Nystagmus Network include the charity’s volunteer benefits adviser, Mike Hughes and trustee, Marie Turnbull who will be available for discussions and to provide … Continue reading Our Manchester Event

How amazing is Roger?


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?” Here’s a story we just had to share. When Roger contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” We were hooked. Roger went on to … Continue reading How amazing is Roger?