Category: Events

Are you in the team?

Team Nystagmus Network will be setting off to walk Eye to Eye at 11am on Sunday 10th March. You can choose to walk the 4 or 14 mile route.

Team Nystagmus Network sets off at 11am

Nystagmus Network trustees will be at the starting point to wave you off.

Ella and Sam are on the team, here’s why:

“Sam and I will be walking in the hope that the money we raise will fund life-changing research for those of us living with nystagmus and the future generations the Nystagmus Network will support.”

Set up your Justgiving page

Click here to join the team today then set up your Justgiving page and link it to the Nystagmus Network to ensure that every penny you raise goes to nystagmus research.

THANK YOU!

Patient Information Day at SELVIS

For families, individuals, children and young people, professionals and organisations

SATURDAY 30 MARCH 2019 11:00-15:00

London Vision South East, Can Mezzanine 7-14 Great Dover Street, London, SE1 4YR

Come along to find out about the new parent network and what’s available, or needed, in your area, and for general information and advice:

  • Eye condition information
  • Parent networking
  • Wellbeing
  • Education and pre-school
  • Employment
  • Leisure, hobbies, travel and sport
  • Technology
  • Benefits
  • Your rights
  • Mobility

Workshops: Drumming (TBC), Education, Habilitation and Mentoring

Book your place by calling: 0203 815 3660 or emailing: [email protected]

Light lunch/refreshments available for everyone who books

The Nystagmus Network will be there! Please come along and say hello.

Fancy a stroll through London?

At 11am on Sunday 10 March 2019 we’re planning the biggest nystagmus community get together of the year. Team Nystagmus Network will be taking part in the Eye to Eye Walk between the iconic London Eye on London’s South Bank to the equally famous and symbolic eye sign outside Moorfields Eye Hospital.

Please join us.

We’re doing this to raise much needed funding for ground breaking research into nystagmus at Moorfields and University College, London.

You can choose to take the 4 mile or the 14 mile walk. It’s up to you.

To walk with Team Nystagmus you need to set off at 11am.

Bring the family, bring the dog and help the nystagmus cause by raising lots of lovely sponsorship.

Please set up a Justgiving page for your sponsors and link it to the Nystagmus Network.

Registration is now open. It’s free for accompanied children under 16 and is just £20 for the 14 mile route and £15 for the four mile route. We suggest a minimum sponsorship of £100 for every participating adult.

Moorfields will supply:

  • Route maps
  • T-shirts for every participant
  • Fundraising support
  • Refreshments, medal, goodie bag and celebration at the end of the walk at their brand new Ect Venue, (Belvedere Road, London, SE1 7PB) next to the London Eye!

Please sign up today!

Part of the ultra challenge series logo

Who’s up for a challenge?

Push Yourself Further – 10 great events in 2019

New for 2019 – the Nystagmus Network has partnered up with Action Challenge to bring you 10 fundraising challenges.

Ellie and Laura have already signed up. What’s stopping you?!

Are you a regular walker and new to endurance events? Perhaps a seasoned trekker looking for testing adventures? Or even a marathon runner wanting to ‘up’ your distance? Whether it’s along magnificent coastal scenery, or in stunning open countryside, there’s an Ultra Challenge for you.

Walk, Jog or Run at YOUR pace on the Ultra Challenge Series event of your choice. Join 20,000 others in 2019 of all ages and experience for an unforgettable Challenge. It will be rewarding, fun, and absolutely achievable with your resolve and determination alongside first class support.

Push yourself further – 100km Full Challenge, with Half and Quarter options also available.

CHOOSE YOUR CHALLENGE:

Isle of Wight Challenge – 4/5 May 2019 Around the coastal path…

London 2 Brighton Challenge – 25/26 May 2019 Iconic route from Capital to Coast…

Jurassic Coast Challenge – 8/9 June 2019 The UK’s best coastline…

Cotswold Way Challenge – 29/30 June 2019 Tough rolling hills and stunning viewpoints…

Peak District Challenge – 13/14 July 2019 A looped route to and from our basecamp in Bakewell…

Chiltern Challenge – 27/28 July Take on the Ridgeway through the Chiltern hills …

South Coast Challenge – 31 Aug/1 Sept 2019 Seven Sisters and South Downs…

Thames Path Challenge – 7/8 Sept 2019 Take on the historic towpath… PLUS – Thames Bridges Trek 25km

The North Downs Challenge – 28 September Festival style season-finisher…

You’ll get full support and hospitality all the way, leaving you to focus on your challenge!

  • Rest stops – free food
  • Half or 1/4 Challenge options
  • 100km Challenge · Join as Individual or Team
  • Walk it, Jog it, or Run it · Pre-event training support + app
  • Camping options available
  • 2 Day Full ‘Daylight’ option
  • Run or Jog – set a New Goal!
  • Walk at Your Pace – 24 hours+
  • Medal, T shirt, glass of bubbly!
  • Medics, massage, and pace walkers
  • ALL meals/ food and drink included!
  • It’s Your Challenge – Your Way

www.ultrachallenge.com [email protected]

CHOOSE YOUR FUNDRAISING OPTION:

Charity Sponsorship – pay a small registration fee and do lots of fundraising!

  • Full Challenge – £15 reg fee + £595 in fundraising
  • Half Challenge – £10 reg fee + £395 in fundraising
  • Quarter Challenge – £5 reg fee + £245 in fundraising

Mixed Funding – pay a higher contribution to the cost of your place and fundraise to a more achievable target.

  • Full Challenge – £99 reg fee + £299 in fundraising
  • Half Challenge – £64.50 reg fee + £199 in fundraising
  • Quarter Challenge – £39.50 reg fee + £119 in fundraising

Find out more about the route, support, hospitality and choose your Challenge at www.ultrachallenge.com

Manchester nystagmus network

The next meeting of our new North West regional group will take place on Saturday 26 January in Manchester. Nystagmus Network trustee, Marie Turnbull will once again be your host and this time she will be joined by our volunteer Education Advocate, Frances Lilley.

We look forward to welcoming back the families and adults who came along to the first meeting in November.

New members are very welcome. For details, please contact us today.

Guest post: Audio described tours at Tate

Dear Friends,

This is a message from Marcus at Tate in which I would like to wish you a very happy new year, and to tell you about Tate’s Audio Description tours for Blind and Partially Sighted visitors in January and February.

Our first tour of the year is at Tate Modern, and takes place on Sunday 20th January 2019. It is a tour and a workshop on German weaver Anni Albers and there are only 14 places available so if you would like to attend please reply via email or telephone me and I will book you a place. The event is led by an artist who investigates how weaving and electrical wiring are related, and together we will weave sonic wire mats which respond to touch. The event is in two parts: an audio description tour led by Dick Thomas in the morning followed by lunch then a workshop in the afternoon. The workshop will be for a mix of sighted and blind people and will be supported with no previous experience necessary at all. Details here.

At Tate Britain on Monday 21st January 2019 at 11.00am we have a tour of Figure Totem Beast, the sculpture exhibition in the Tate Britain Duveen Halls. As well as describing these sculptures from the 1950s we will be able to touch them using gloves provided. Please meet as usual in the Manton Studio from 10.30 for refreshments. Details here.h

At Tate Britain on Monday 18th February 2019 at 11.00am we will be describing the totally new Art Now display by Jesse Darling. Jesse works between London and Berlin and creates sculptures which look at the link between art, health, disability, Batman and St Jerome and the Lion. Meeting point is again at the Manton Studio for refreshments before the tour. Details here.

More news about our exciting Millbank Mondays Audio Description tours coming up very soon

Your friend at Tate

Marcus

Join our Manchester group

The first meeting of our brand new North West regional group took place on Saturday 17 November in Manchester. Huge thanks to Nystagmus Network trustee, Marie Turnbull for hosting, to Mike and Lindsi for their professional input and to the families and adults who came along.
The next meeting of this group is on Saturday 26 January in central Manchester. New members are very welcome.
For details, please email us today.

Dark City theatre event – Bristol

DARK CITY SESSIONS

Are you interested in stories, theatre and creative technology?

Then join PECo theatre in a monthly event to connect with others and get inspired!

Working with a group of visually impaired core collaborators and others in Bristol, PECo theatre is developing ‘Dark City’an immersive multi-sensory theatre piece exploring visual impairment.

Open to anyone who is visually impaired or connected to the visually impaired community, Dark City sessions are an enjoyable and inspiring way for you to engage with and help develop the project as it evolves.

Each session will include:

  • Live podcast interviews hosted by radio legend Alan Dyte
  • Informal Q + A, with a focus on different causes of sight loss each session
  • Exclusive sharing of the work created by the theatre company so far, with a chance for you to give your feedback and ideas
  • Opportunities to discuss creative activities you would like made accessible in Bristol

Sessions take place at Pervasive Media Studios, Watershed, central Bristol, Friday evenings. First session is Friday 30th November 6.30 – 9pm.

Sandwiches and other light refreshments will be available and we can even contribute to the costs of your travel!

Numbers are limited so to reserve your place and register please contact:[email protected]