In a report presented this summer, 15 of a sample of 116 patients with Multiple Sclerosis were found to have Acquired Nystagmus. Ocular manifestations often present first in multiple sclerosis September 6, 2019 COEUR D’ALENE, Idaho — There is a high frequency of ocular manifestations in patients with multiple sclerosis, both at onset and during the … Continue reading 13% of MS patients have acquired nystagmus
Category: Posts
Are you a digital champion?
Do you have the digital know how to take the Nystagmus Network up to the next level? The Nystagmus Network is keen to recruit a new trustee with the right skills set. If you have a connection with nystagmus, have digital experience and expertise, could easily travel to London for quarterly meetings and would be interested in … Continue reading Are you a digital champion?
And the winner is …
The results are in from our Facebook and Twitter polls and we can finally announce the name of our fabulous ‘Nystagmus is …’ competition winner – drum roll, please … it’s Samantha Keeley. Samantha’s winning description of nystagmus is: “Where you see everything but the one thing you are looking for which was right in … Continue reading And the winner is …
Mike’s wiggly walk – video update
Mike has nystagmus and so does his young nephew, Archie. Later this year and well into 2020, Mike will be walking the length of New Zealand to help find a cure for nystagmus. The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in … Continue reading Mike’s wiggly walk – video update
We publish our annual review 2018
Trustees are pleased to announce that the 2018 Annual Review of the Nystagmus Network is now published on the Charities Commission website. Chairman of the charity, Richard Wilson OBE, says: “In summary, 2018 has been an outstanding year of success for the Nystagmus Network, building more awareness, investing in more research, offering more support and … Continue reading We publish our annual review 2018
How amazing is Sonny-John?
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?” On Nystagmus Awareness Day itself a family shares their son’s amazing nystagmus story … “Our eldest boy, Sonny-John has nystagmus, and from as long as we can remember he has been … Continue reading How amazing is Sonny-John?
How amazing is Jane?
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?” Jane believes that having a sense of humour really helps. Here she tells her story: “My name is Jane and I have idiopathic, congenital nystagmus. My wobbly eyes have given me challenges, … Continue reading How amazing is Jane?
How amazing is Alfie?
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?” To his parents, Alfie truly is AMAZING. Here’s what they have to say about him … “As well as having nystagmus, Alfie also has FEVR, a progressive eye condition that affects … Continue reading How amazing is Alfie?
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 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?