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Congenital Nystagmus Forum

Notes from the May 2021 meeting
Notes from Adults' Congenital Nystagmus Forum- May 

Thank you to everyone who joined us for the Nystagmus Network
May Forum for Adults living with Congenital Nystagmus. It was
especially nice to welcome our new friends.

Gardening
Several of us have been enjoying extra time in our gardens
during lockdown and especially now as the weather warms and
travel restrictions remain.

Gabapentin
There was some discussion of drug treatments for nystagmus.
These are usually of the muscle relaxant type, eg Gabapentin,
Memantine or Baclofen. The drugs can help symptoms, but also
have side effects which some people find counteract any
beneficial effect. Please always read paperwork carefully and
speak to your doctor if you have any concerns.
Special School or mainstream?
The advantages or disadvantages of either type of education were
considered with some sharing their own experiences. Most
children and young people are currently schooled alongside their
peers, with support, though in may cases that support can be
hard won.

Sight Village
QAC Sight Village London takes place on 2 and 3 November 2021
at Kensington Town Hall. The Nystagmus Network usually
provides a stock of information leaflets for delegates attending
this event which is open to the public.

Diagnostics
The Nystagmus Network has been investing in research since the
1990s, thanks to the generosity and hard work of its supporters,
fundraisers and members. Diagnostics are so much better now
than 30 years ago, with a barrage of tests able to pinpoint likely
causes, identify or rule out other health conditions and even,
most recently, provide an accurate prognosis of the likely effect
on vision. This is the vital first stage of investigation. Until this is
secure clinicians cannot begin to look at treatments.

Open Day
The Nystagmus Network annual Open Day will once again be a
virtual event this year. The date is Saturday 25 September. There
will be a digital programme of live and pre-recorded events,
workshops and presentations. If you would like to receive the
programme from 2020 and view the recordings, please email us
at info@nystagmusnet.org.

Nystagmus Awareness Day
National and international Nystagmus Awareness Day is
celebrated annually on 20 June. We will share with you soon our
digital programme of live and pre-recorded events, workshops
and other sessions for you to enjoy. Meanwhile, you can find out
more on our website here.

Membership
The Nystagmus Network is a membership organisation. Trustees
chose this model for the charity to create a virtual nystagmus
community. Being a member means that you are part of a patient
group and we can make our voice heard in clinical, education and
research arenas.
Thank you to those of you who are already members. If you are
not a member and would like to find out more, please visit the
membership page of our website. Thank you.

Facebook
Please do join the Nystagmus Network Facebook group for
adults. It’s there for you to help you connect with others and the
charity posts lots of news items there, too.

Date of next meeting
Thursday 17 June at 7pm (GMT+1)

Keep in touch and I look forward to seeing you next month.
Meanwhile, stay safe and well and enjoy your gardens.
Best wishes

Sue


ENDS

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