Volunteers needed


It’s thought that some types of nystagmus are caused by a genetic spelling mistake. Although nystagmus is not classified officially as a rare disease, we can all take part in genetic research to help researchers find out more. The NIHR BioResource – Rare Diseases has been established to identify genetic causes of rare diseases, improve … Continue reading Volunteers needed

Improving the infantile nystagmus test


Delegates at 100% Optical learned about progress on refining the way an eye movement disorder is identified in babies Professor Jon Erichsen from the University of Cardiff gave a presentation on infantile nystagmus to eye care professionals at the recent 100% Optical event (ExCeL London, 25–27 January).   Professor Erichsen highlighted that in the condition there … Continue reading Improving the infantile nystagmus test

Alison joins the Nystagmus Network


We are delighted to announce that Professor Alison Leary MBE has joined the Nystagmus Network as a trustee. After spending 10 years in science Prof. Leary undertook an RN diploma at The Nightingale School at St Thomas Hospital (now Kings College London). She attained a Masters in Biomedical Science (Haematology) and worked in acute Haematology … Continue reading Alison joins the Nystagmus Network

Nystagmus researchers need your help


Common misconceptions about nystagmus A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond. They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both … Continue reading Nystagmus researchers need your help

Daniel joins the Nystagmus Network


The Nystagmus Network has appointed Daniel Williams, sight loss campaigner and founder of Visualise Training and Consultancy, to its committee of Trustees. Chair of the charity’s trustees, Tim Cuddeford said: “We are delighted to welcome Daniel to the committee as he brings a comprehensive overview of the sight loss and optical sectors and first-hand knowledge … Continue reading Daniel joins the Nystagmus Network

Join us at the Manchester meet up


The next meeting of our north west regional Nystagmus Network support group is on Saturday, 25 April from 1 to 3pm in central Manchester Adults with nystagmus, parents of children with nystagmus and anyone supporting someone with nystagmus are all welcome to come along. The meet to is hosted by Nystagmus Network trustee, Marie Turnbull … Continue reading Join us at the Manchester meet up

Chloe says: it’s OK to have a bad day


The pressure to be positive as a disabled person In her latest post, award-winning blogger, Chloe shares her thoughts on the strain of staying positive and being an ‘inspiration’. The pressure to act a certain way is unfortunately more common than we care to admit. This might be pressure from social media, society or the … Continue reading Chloe says: it’s OK to have a bad day

Parent Power comes to Leeds


Parent Power, funded by the National Lottery Community Fund The Nystagmus Network invites parents and carers to attend our final Parent Power education workshop. Venue:      DoubleTree by Hilton, Leeds City Centre Date:          Saturday 14 March Time:         9.30am to 3pm The aim of the project is to empower parents and carers with legally based information on … Continue reading Parent Power comes to Leeds

Fight for Sight survey on eye conditions and sight loss


Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research. … Continue reading Fight for Sight survey on eye conditions and sight loss

Are you going to LookFest 2020?


LookFest is an accessible family festival outdoors and under canvas for families where there are children and young people with impaired vision.After the huge success of LookFest 19, they’re doing it all over again in July 2020. Join them in the beautiful Herefordshire countryside for a fun-filled weekend with the #LookFamily See the highlights of last … Continue reading Are you going to LookFest 2020?