nystagmus – Page 19 – Nystagmus Network

Notes from the January Parent Forum

The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling.

It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s fair to say we’re all looking forward to some warmer weather, when we can get the children back outside, and to schools reopening, too.

We covered topics including resources, creative activities, down time, eye health and screen use and EHC plans. Here are just a few follow up notes which I hope will be useful.

Homeschool BBC Bitesize – learning resources for all Key Stages and those downloadable timetables

Homeschooling and nystagmus: read Nadine’s blog post

Eye health and screen time Association of Optometrists’ advice on screen time and eye health

Specsavers’ information on children’s eye health and screen time

The 20-20-20 rule explained by Fight for Sight in this BBC article

SEN support at school IPSEA online courses for parents are really helpful with the EHCP process or if you need to prepare an appeal. The next EHCP masterclass for parents is on 9 February and there are lots more online learning opportunities.

The Nystagmus Network offers an education advocacy service for parents who are members of the charity. This is one to one bespoke support provided by our IPSEA trained volunteers, Frances and Claire. Membership subscription is £25 per year. Please let me know if you’d like to be referred to our education advocates.

General information for parents You can download a whole range of information for parents and carers from our website.

Please keep an eye on our Facebook page for all our latest news and information and, if you haven’t already, please join our Facebook group for parents.

And finally … please remember we’re only an email or a phone call away.
I look forward to seeing you at the next parent forum.

If you’d like to join the next Nystagmus Parents’ Forum, please contact us here.

Nystagmus Networking

With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can.

Keeping you connected

Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month.

For parents

There will be a virtual parents’ forum at 8pm on Tuesday 12 January. Share experiences, make new friends. This session will focus on homeschooling and keeping little ones happy, engaged and learning at home. This session will be a zoom chat. Everyone welcome.

Please contact us to join.

For adults with congenital nystagmus

There will be a virtual Congenital Nystagmus Forum for adults at 7pm on Tuesday 26 January. Share experiences, make new friends. This session will focus on treatments available around the world. This session will be a zoom chat. Everyone welcome.

Please contact us to join.

For adults with acquired nystagmus

There will be a virtual Acquired Nystagmus Forum at 5pm on Monday 18 January. Share experiences, make new friends. This session will focus on virtual hospital appointments and progress with our AN data bank. This session will be a zoom chat. Everyone welcome.

Please contact us to join.

Tim stands by a Christmas tree. He is holding a glass of wine and wearing a strand of tinsel around his shoulders.

A Christmas message from Tim

Nystagmus Network Chairman, Tim Cuddeford has sent a Christmas message to members of the Nystagmus Network.

Tim spoke of the challenges that 2020 has brought for everyone, not least the nystagmus community, but also highlighted the successes the charity has been able to achieve, thanks to the support of our intrepid fundraisers and donors and the generosity of National Lottery players and those who donated to the charity’s BBC Radio 4 appeal. The team has continued to provide support and information services, albeit virtually, and even fulfil research investment commitments, whilst adapting services to meet growing and changing needs.

The charity looks forward to a happier, healthier and safer New Year for all.

If you would like to join the Nystagmus Network as a member, you can find out more here

Membership of the Nystagmus Network

Thank you for donating to our BBC Radio 4 appeal

Thank you to everyone who gave to our BBC Radio 4 charity appeal in June this year. The appeal raised £9, 230.

You can read what a difference the appeal has made to the charity and the nystagmus community on the BBC website here where you can also listen again to Richard Osman presenting the appeal on behalf of the charity.

Thank you, Richard

Read our appeal story here

Zoe wears a care worker's uniform and a face mask pulled down under her chin for the photo.

Thank you, Zoe

It’s fitting that our final nystagmus hero of 2020 is someone who has been working tirelessly all year looking after some of our most vulnerable people.

Zoe is a care supervisor and head house keeper in a care home, working over 40 hours a week. She was born with nystagmus and optic atrophy. She struggles every day with eye pain and headaches and trying to concentrate when her eyes wobble a lot, but she works hard and does an amazing job.

She sometimes feels alone, because she’s never met or spoken to anyone with the same condition. A lot of us can relate to that.

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Thank you, Nikita

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). Nominated for her innovative work in perimetry, we’re sure that Nikita has a brilliant nystagmus research career ahead of her.

And now we’re not the only ones to think so. You can read all about Nikita’s nomination here: https://nystagmusnetwork.org/congratulations-nikita/

Congratulations, Nikita!

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Thank you, Nadine

Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and schools closed, Nadine came up trumps again with advice and tips for parents struggling with homeschooling.

Most importantly of all, Nadine allowed us to let go of the guilt and just enjoy spending more time with the children. You can read all Nadine’s handy hints here: https://nystagmusnetwork.org/homeschooling-and-nystagmus/

Nadine, you’re a hero, but you’re also human, just like the rest of us.

Thank you!

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time! Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Sold out!

Thank you to everyone who has ordered a woolly nystagmus mascot this year. We are now officially sold out.

Together you have raised £360 and given new homes to 72 mascots.

THANK YOU!

Huge thanks, too, to our volunteers, Lynda and Sue, for all the knitting.

Thank you, Mervyn

Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment.

Thanks to the work of Dr Melvyn Thomas and the research team at the University of Leicester there is now a validated method of predicting prognosis in children and infants with infantile nystagmus.

This development answers the question most parents of newly diagnosed babies have: How well will my child be able to see?

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Thank you, Libby

Inspired by her 2 younger sisters, who both have nystagmus, final year geography student, Libby chose to explore the experiences of young visually impaired adults in their local space and environment and the impacts on identity formation for her dissertation.

You can read more about Libby’s research here: https://nystagmusnetwork.org/can-you-help-libby-with-her-research/

Thank you for being a great ‘big sister’, Libby.

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020