Nystagmus Network (NN) E-newsletter, June 2015

Blackpool Tower Joins Wobbly Wednesday celebrations

Once again Blackpool Tower will be lit up in blue to celebrate Wobbly Wednesday.   Wednesday 4 November is the day when Nystagmus Network is leading an international campaign to raise awareness of the eye condition nystagmus

To help with planning Wobbly Wednesday events, NN has produced an A-Z list of ideas; organisers can also download an activity sheet and poster from the NN websitehttp://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday.  For a full supporter pack email info@nystagmusnet.org.   Connect with Wobbly Wednesday through Facebookhttps://www.facebook.com/groups/WobblyWednesday/

NN and Fight for Sight offer £15k research grant (July 2015)

The Nystagmus Network and Fight for Sight charities have teamed up for the fourth year in succession to invite applications for a £15,000 research grant. This Small Grant Awards Scheme is open to applicants attached to a UK academic or medical institution doing clinical research in the field of nystagmus.

The closing date is August 19th, 2015. For full details contact John Sanders email john.sanders@nystagmusnet or call, 029 2045 4242.

See you in Reading

Save the date - Saturday 7 May 2016 - The Nystagmus Network Open Day will be back in the South of England at the Hilton Hotel Reading.  You can meet other people and families of children with nystagmus.  Watch this space for booking information and details of the day’s programme.

New albinism study in Southampton

The University of Southampton would like to thank everyone who volunteered to join a patient panel to help develop a research project on albinism and vision. The aim of the study is to establish whether Levodopa replacement in albinism can optimise retinal 

Development in children and improve visual function. Thanks to the help of NN, the researchers were able to find a panel in record time and can now start work on the project.

Fourth international nystagmus research workshop

Fifteen researchers and medics from the USA, UK, Australia and the Netherlands gathered in New Orleans at the end of July for the American Nystagmus Network’s (ANN) first and the world’s fourth international research workshop. They discussed drugs, implants, surgery, medical magnets and developments in genetic testing. They agreed that advances in OCT, genetics and electrophysiology mean that the diagnosis "idiopathic nystagmus" should become a thing of the past in our lifetimes. They heard that understanding nystagmus eye muscle structures may lead to potential therapies. They also discussed some of the big unanswered questions in the field of nystagmus: Why do the eyes move? Why does the null point occur? And how can we come up with a better measure of functional vision than visual acuity?

Star at the show

The research workshop was followed by the American Nystagmus Network conference.  Towards the end of the day Apl.De.Ap of the Black Eyed Peas turned up. Apl has nystagmus and spoke about being teased as a youngster and how his life slowly changed for the better. But nystagmus still affects him now. He checks out every stage before a performance to make sure he knows how to avoid any hazards when he's dancing.

Nystagmus lecture in Cardiff

Cardiff University has once again invited NN's John Sanders to give a lecture about nystagmus to optometry students during the next academic year (date to be confirmed). If you would like John to give a talk, please email john.sanders@nystagmusnet.org.

Orthoptists win praise for nystagmus poster

A group of lecturers and student orthoptists from Sheffield University used the information they gathered from attending this year’s Open Day to produce a poster which they displayed at the BIOS (British & Irish Orthoptic Society) scientific conference in Birmingham.  Thanks to everybody at Sheffield for spreading the word about nystagmus.

New nystagmus blog

Every so often something comes along that catches our eye, in July we were sent the link to a new blog by Sophie a young lady with nystagmus.  Now we all know that nystagmus affects people differently and there is no definitive diagnosis but we reckon this new blog is one of the best we’ve seen in a long while, written honestly, with just the right tone to explain what it’s like to have nystagmushttps://nystagmusinanutshell.wordpress.com/

Fundraising thanks

Nystagmus mum Rachael Diaczuk organised a masquerade ball that raised £1600 in Stockport.  Rachael and her family including son Lucas who has nystagmus had their photo in the local paper.  Earlier in the year Rachel and friends climbed Snowdon.

It’s a family affair in Nuneaton.  The great grandparents of Matthew Cartwright raised over £300 on their 60th wedding anniversary. The Cartwright family has raised the best part of £10,000 for NN, including Dad Jon, running the London marathon and Grandad Brian, organising a golf day.

Meanwhile a team of cyclists who completed the London to Brighton bike ride. Together they raised £… Two members of the team had separate family connections to nystagmus.

Contact Nystagmus Network:

Tel: 029 2045 4242 email: john.sanders@nystagmusnet.org

Helpline: 0845 634 2630, email: info@nystagmusnet.org

Website: http://www.nystagmusnet.org