Month: January 2019

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.

A lesson in nystagmus

The Nystagmus Network has a free to download lesson plan about nystagmus. Designed for use in schools and preschools on Nystagmus Awareness Day or any other day of the year, the aim is to raise awareness of nystagmus and its wider effects and to help a child with nystagmus feel more included in the classroom.

Download your copy here.

Children pointing at a computer screen.

Volunteer needed

Are you good at IT?

The Nystagmus Network is looking for the right person to offer us some IT support. The skills, knowledge and experience we’re looking for include:

  • Programming languages
  • Common operating systems
  • Software proficiency
  • Web management
  • Data collection

The time commitment isn’t huge, just a couple of hours here and there, but your availability for advice and support would be invaluable. If you’re passionate about nystagmus and the work of the charity, even better.

We can offer you the opportunity to help the charity innovate and develop to meet the growing needs of the wider nystagmus community and our eternal gratitude and admiration.

Interested?

Please email us today at [email protected]

Raising nystagmus awareness in 2019

The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year.

Why raise awareness?

We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition.

New for 2019

We’ve revised and updated two free to download PowerPoint presentations.

Introducing Nystagmus or Wobbly Eyes

This presentation is aimed at children in school or pre-school and explains how congenital nystagmus affects young children. Click the link to download Introducing Nystagmus or Wobbly Eyes

Introducing Nystagmus

This presentation is designed to be shown on a screen in reception at a workplace, in clinic or in a hospital waiting room and explains both congenital and acquired nystagmus and how these 2 conditions affect children and adults. Click the link to download Introducing Nystagmus

Nystagmus Network members hold up their voting cards.

Are you a member?

There’s nothing quite like the feeling of belonging, to know that you’re part of a community and among friends, all working for the same goals as you.

That’s why the Nystagmus Network is a membership organisation.

The more people we represent who are affected by nystagmus, or have an interest in the condition, the better able the charity will be to influence real change and to make your voice heard.

Membership benefits include:

  • Priority booking for all events, including a FREE place at Open Day
  • Access to our advocacy service and ongoing advice and guidance
  • Automatic subscription to our fortnightly e-newsletter, Focus
  • Support and information from a named staff member or volunteer
  • Contact from us by email or post about charity developments
  • Personalised advice on nystagmus and benefits
  • Regular updates on research and trial participation opportunities
  • News of fundraising events, including FREE run places
  • Invitations to participate in local and regional groups
  • Notification of our annual Nystagmus Awareness Day campaigns
  • Networking opportunities with others affected by nystagmus
  • A proportion of your subscription will go directly into funding research

We offer affordable membership to anyone affected by nystagmus. Together we can all make a difference.

You can join us as a member in a number of ways

Buy an annual subscription through a one off payment of £20 from our online shop, here.

Sign up for an annual Direct Debit payment of £20. Contact us to request a DD form here.

Set up a regular monthly payment online, where you decide the amount you pay, through our CAF (Charities Aid Foundation) Account, here.

JOIN US TODAY! 

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!

Have you sent in your photo?

There’s still time to enter our Christmas 2018 photo competition.

Entrants can be any age. They must have nystagmus themselves or be the close relative of someone who does.

To enter the competition please submit 1 high resolution image only, which must be your own work. The subject matter is simply Christmas.

The winning photograph will feature on our 2019 Christmas cards.

Please email your photograph, by no later than Thursday 31 January to [email protected].

We’ve already had some fabulous entries, including this one from Menh.