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Parents Nystagmus Forum

Notes from the June 2021 meeting
Notes from Parents’ Forum – June
Thank you to everyone who joined us for the Nystagmus Network June Parents’ Forum.

Nystagmus and Sleep
Fresh from our attendance at the Nystagmus Awareness Day
online presentation earlier in the day ‘Nystagmus and Sleep’ by
the research team at Circadian Therapeutics, we were keen to
share some thoughts on ‘sleep hygiene’ or having a regular
bedtime routine and discussed the team’s future research into
eye movements and sleep.
You can contact the team directly here:
Link to register your interest in the sleep survey:

http://bit.ly/blindstudyregister

Phone number: 01865 546582 (leave a message, they will call
you back)

Website: https://blindsleepstudy.com/

Please do get involved if you can. The team are keen to hear
from more people with nystagmus experience.

EHC plans
There was some discussion of EHC plans, how precise the
information should be in terms of support and outcomes.
There is general advice on EHC plans available from Guide dogs
here.

https://www.guidedogs.org.uk/getting-support/information-and-
advice/education-support/


You can find up to date news and advice about EHC plans on the
Council for Disabled Children website here.

https://councilfordisabledchildren.org.uk/search/content/EHC%20

plan. Whether or not an EHC plan is needed, your QTVI is your first
port of call for support. The Nystagmus Network is happy to help
you with advice on nystagmus specific recommendations.
See our website here for guidance on how to contact your QTVI.

https://nystagmusnetwork.org/education-resource-hub/at-home-
and-in-early-years-settings/how-to-contact-a-qtvi/

Coloured writing paper
Pastel coloured writing paper with bold coloured lines is often
easier for children with nystagmus to use for writing and reading
back their own work, rather than bright white paper with feint or
even very dark black lines. Let your child try a range of
combinations. Their preference may even vary from day to day.
The Raindrops story writing paper is pale blue with darker blue
lines. You can download it here.

https://nystagmusnetwork.myshopify.com/collections/raindrops/p
roducts/raindrops-story-writing-paper

Nystagmus – our perspective
We mentioned the new film now available, thanks to our friends
at the German Nystagmus Network. It features four adults talking
about their experiences living with congenital or acquired
nystagmus. The film is in German but with English subtitles. You
can view it here.

https://www.youtube.com/watch?v=GVEtZm27TN4

Notes from the Saddle
During a chat about scooters and cycling we shared with you the
triumph of one of our trustees, Sam Jones, who last week
completed the North Coast 500 cycling challenge, cycling 500+
miles in 8 days to raise funds for the Nystagmus Network. Sam
has congenital nystagmus and is the reason the charity was
founded, in 1984 by his mother, Vivien. You can enjoy the highs
and lows (and the navigating difficulties!) of Sam’s trip in video
form on our website here.

https://nystagmusnetwork.org/raindrops/notes-from-the-saddle/

The Welly Walk
Finally, please remember to take part in the Welly Walk for
Raindrops this Saturday or Sunday if you can – thank you, team
Shelley and Jack! Whether it’s raining or not, we want you to join
in the fun and walk 5k for nystagmus in your wellies on Saturday
19 or Sunday 20 June. Get the whole household along, including
the dog and get sponsored.

Money raised from sponsorship of your welly walk will go towards
the Nystagmus Network research fund and there will be prizes for
everyone who raises £100 or more.
Can’t take part but want to support Shelley? You can sponsor her
here.

https://www.justgiving.com/fundraising/shelley-mulville


Don’t forget to download your digital events programme for
Nystagmus Awareness Day.

https://nystagmusnetwork.myshopify.com/collections/raindrops/p
products/nystagmus-awareness-day-2021-events-programme

Date of next meeting: Tuesday 13 July 8pm
Take care and I look forward to seeing you next time.
Happy Nystagmus Awareness Day!

Best wishes
Sue
 
ENDS

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