Month: March 2018

David Katz – our special guest speaker at Open Day 2018

We are delighted to announce that David Katz, the internationally acclaimed photographer, will be joining us as our special guest speaker at our annual Open Day on 29 September.

David was with us all in spirit last year, of course, when we were honoured and privileged to have been granted permission to premier his amazing film, Through my Lenses. In the film David reveals that, throughout his success behind the camera, he managed to conceal the fact that he is actually registered blind. He speaks personally and very movingly about his upbringing, the gift of a first camera from his father and the support from his mother, in particular, who taught him a lesson that will stay with him for life – there is no such word as can’t.

David is currently enjoying yet another official photography assignment, one which we know will hold a very special place in his heart. He is in Pyeongchang, covering the Winter Paralympics.

We look forward to seeing David, again, in Birmingham on 29 September.

 

Marsha de Cordova MP – our Open Day keynote speaker

We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.

Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.

The photograph is by Graeme Robertson for the Guardian.

Friday Fundraisers on Facebook

Every Friday on our Facebook page we celebrate the achievements of the week’s top fundraiser, feature the story of one of our upcoming fundraisers or signpost you to fabulous and fun fundraising opportunities. So please join us every Friday on Facebook and help us say a huge thank you to all our wonderful fundraisers.

Our fundraisers make it possible for us to continue our important work supporting everyone affected by nystagmus, providing information, raising awareness and funding research. We cannot do any of this without them.

Last week’s Friday Fundraisers were Jemma, Jo, Fergie and Jorja. Please sponsor them if you can and then go and find out about this week’s Friday Fundraiser.

Thank you!

Sue visits Queen’s Medical Centre, Nottingham

Dr Kong Yien Chin, a clinical scientist working in the Evoked Potentials Clinic at Nottingham’s Queen’s Medical Centre, invited the Nystagmus Network’s Sue Ricketts to view the clinic, meet the team and discuss potential collaboration opportunities on nystagmus research projects.

Sue was very impressed by what she saw. The last time she had stepped inside such a clinic was some 25 years previously, when her baby daughter had undergone VER (visual evoked response) and ERG (electro-retinogram) testing to confirm her diagnosis of congenital idiopathic nystagmus.

Although the appearance of the test materials themselves may not have changed much over the years (Sue well remembers gazing at a flashing checkerboard image as she cradled her daughter), Head of Evoked Potentials, Professor Christopher Degg, explained that new techniques have been developed and refined over the years to increase the depth and precision of the analysis of the readings, providing different information about visual function relevant to patients, including those with nystagmus. The technology involved is firmly at the cutting edge of medical science.

Sue came away with an appreciation of how it can be beneficial for people affected by nystagmus to seek appropriate assessments for best possible understanding of their condition.

Dr Chin commented:”This meeting is an important milestone for the Nystagmus Network and the Evoked Potentials Service in Nottingham. We have the desire to play a significant role in future collaboration with the Nystagmus Network and alongside current and future research groups on potentially life-changing research that will particularly benefit those affected by nystagmus.”

Thursday is research news day on Facebook

Every Thursday on our Facebook page we publish the latest news on nystagmus research or publish details of new nystagmus trials that you can take part in.

We are currently supporting these trials:

  • The Southampton University Hospital team need to find people with albinism and nystagmus, aged over 60 so that Mr Jay Self and his colleagues can discover why people with albinism seem to be immune from AMD (Age-related Macular Degeneration).
  • The Cardiff University team are looking for children with congenital nystagmus aged from 6 months to 10 years, with our without Downs Syndrome, so that they can find out more about how vision develops in young children.
  • The Moorfields/UCL team, under Mr Vijay Taylor, are recruiting adults with congenital ideopathic nystagmus, between the ages of 18 and 50, to investigate the phenomenon known as ‘visual crowding’ associated with nystagmus.

Don’t miss your chance to take part in research and read the latest nystagmus-related news!