Parents Nystagmus Forum

Notes from the July 2021 meeting
Notes from Parents’ Forum – July

Thank you to those who joined us for the Nystagmus Network July Parents’ Forum.

We were a small group this month, but still managed to cover such diverse topics as resilience and independence, mobility training, inclusion and diversity in the workplace and how to advocate for disability, as well as registration and EHC plans.

Useful links for reference are:

Nystagmus Network Guide to Registration  
The RNIB Guide to registration  Certification and registration of children and young people - RNIB - See differently
DLA, PIP and Nystagmus
RNIB benefits for children/Young people    Benefits for carers and children - RNIB - See differently
For those who’d like to make contact with their local ECLO (Eye Clinic Liaison Officer) you can search the Sightline Directory.

The Welly Walk
Thank you to all families who took part in the Welly Walk for Raindrops. Together you helped us raise an amazing £3,084 which will go towards the Nystagmus Network research fund. Everyone who raised £100 or more is now receiving their T shirt.
Raindrops Stories and Pictures 
Thank you to everyone who encouraged their child to enter their stories and drawings in the Raindrops competition. The judges are now busy choosing their favourites and we will announce the winners soon. Meanwhile, you can view some of the Raindrops pictures on our website.
Open Day 2021 – Saturday 25 September 
The Nystagmus Network team is now very busy planning the programme for virtual Open Day 2021. The theme is ‘How amazing are you?’ and we can promise a packed programme of presentations, videos, interviews, forums, competitions and a special virtual networking event. We’ll keep you posted!
Booking for Open Day is free and opens on 3 August.
We wish you a lovely relaxing summer and look forward to seeing you again in September.

Best wishes


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