On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible. Meeting at Portcullis House, trustees, all wearing their Nystagmus Network … Continue reading Charity trustees meet Marsha
On Nystagmus Awareness Day 2018, the Nystagmus Network’s Information and Development Manager, Sue, shared her nystagmus story and explained why it’s so important to continue to raise awareness of nystagmus. Read Sue’s online article here.
A guest post from Sara’s Mum … This is my daughter Sara. She’s 17 now and born with albinism and nystagmus. Her sight is badly affected, but nothing stops her!!! She is in mainstream school, a huge circle of amazing friends and lives for sports. She has an all Ireland silver medal for camogie (an … Continue reading How amazing is Sara?
Amanda is a long time supporter of the Nystagmus Network UK and our unofficial US spokesperson. As a professional freelance writer, who also has nystagmus, she is well placed to tell her amazing nystagmus story … My Nystagmus Journey: Fifth grade diagnosis and beyond Fifth grade – that’s when my life changed because of my … Continue reading How amazing is Amanda
Here’s Gary’s sporty nystagmus success story … Since 2014 I’ve been playing county cricket for Warwickshire Visually Impaired Cricket Club. The club comprises players of all ages (my shirt number is 49 – the age at which I made my debut) and varying levels of sight. Several of our players are registered blind and we … Continue reading How amazing is Gary?
Maureen tells her own nystagmus success story … I started school in 1945. They didn’t have the pre-school checks they have now. No-one had noticed anything out of the ordinary. I was riding a two wheel bike before I was 4. I used to bump into things and fall off regularly, but nobody saw anything … Continue reading How amazing is Maureen?
Like lots of children, Macy has nystagmus as well as more serious health problems. Here’s her story, as told by her Mum … In January 2016, Macy our baby girl suffered a sudden out of hospital cardiac arrest at 3 months old. After being resuscitated twice, once by paramedics at home and again at Wigan hospital, … Continue reading How amazing is Macy?
A nystagmus Dad writes: Michael is 19. In 1999 he was diagnosed with congenital idiopathic nystagmus at around 3 months of age. We immediately did an internet search to find out what nystagmus was. I couldn’t even spell it properly, but within a short time we found Nystagmus Network. This turned out to be a … Continue reading How amazing is Michael?
If you ever visit our Facebook page you will know Chris. She’s very knowledgeable about nystagmus – and sight impairment generally and so generous to everyone with her time and support. Here’s her amazing nystagmus story: Back in 1973, living at home with my parents, I read in our local paper about a new national organisation … Continue reading How amazing is Chris?
Here’s Dave’s nystagmus success story, in his own words. I have congenital nystagmus. The main limitation I have experienced is not being able to drive. However, at the age of 68, I can reflect on what I have been able to achieve in my life and feel very happy. I have been happily married for … Continue reading How amazing is Dave?