Parent Power, funded by the National Lottery Community Fund The Nystagmus Network invites parents and carers to attend our next Parent Power education workshop. Venue: DoubleTree by Hilton, Cambridge City Centre Date: Saturday 25 January Time: 10am to 2pm The aim of the project is to empower parents and carers with legally based information on … Continue reading Parent Power comes to Cambridge
Category: Posts
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 … Continue reading Would your child like a German pen friend?
Parent Power comes to London
Parent Power, funded by the National Lottery Community Fund The Nystagmus Network invites parents and carers to attend our next Parent Power education workshop. Venue: Can Mezzanine, Borough, London Date: Saturday 23 November Time: 9.30am to 1pm The aim of the project is to empower parents and carers with legally based information on how to … Continue reading Parent Power comes to London
13% of MS patients have acquired nystagmus
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
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?