The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together.
If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome.
At our recent virtual Open Day we were lucky enough to be joined by Professor Chris Harris, a leading UK expert in AN and oscillopsia at the Royal Eye Infirmary, Plymouth. Chris recorded a presentation for us, which you can view here and then took part in a live Q+A session with our group on 3 October.
Since then we have continued to reach out to more people living with AN and Oscillopsia so that we can support Chris in his research endeavours. We are gathering a sizeable ‘patient’ group together and are collating meaningful data on causes, symptoms, treatments (conventional and alternative therapies, helpful or otherwise) and evidence of the effects of these conditions on general wellbeing, including mental health.
We are also writing up and recording your stories and drafting a questionnaire to help us collect even more information.
All of this will enable Chris to strengthen his applications for further funding for research into these debilitating and often life-changing conditions.
If you would like to be included in invitations to all future zoom get togethers for people living with Acquired Nystagmus and Oscillopsia, please contact us here.
At our most recent online meeting we were joined by people with experience of new drug and surgical treatments.
Our next call will be in January when we will share an update on the work we have done so far in our evidence gathering.
If you would like to join our virtual AN support group, please contact us here and we will be happy to introduce you.
Please do help us with this exciting new project. We look forward to having you with us.