Category: Nystagmus heroes

Nadine smiles for the camera

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

Mike wears his Nystagmus Network T short and smiles for the camera

Thank you, Mike

What can we say about Mike that hasn’t been said already? He endured so much for the nystagmus cause this year – including very wet feet, a constantly rumbling tummy and often only the company of chickens!

But Mike still walked 3000 miles to raise £2,500 for the Nystagmus Network. A-m-a-z-i-n-g!

And after all that he even dropped in to our Night in with the Nystagmus Network to entertain us all. Thank you, Mike.

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

Mervyn smiles for the camera.

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

Libby smiles at the camera.

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  

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Julia and her young daughter smile for the camera. They are at the seaside and the child is holding a toy windmill.

Thank you, Julia

Living with the triple whammy of nystagmus, myopia and astigmatism, Julia is an accomplished musician. She also sings in choirs, which often happens in poorly lit churches.

In her blog post, Julia regaled us with hilarious stories of missing her applause and mistakenly stealing someone else’s limelight all because she cannot see the conductor. She also shared that her young child now helps her with the bus numbers. Thank you, Julia, for sharing your lovely insight into the life of a parent with Nystagmus. You can read more of Julia’s musical adventures here: https://nystagmusnetwork.org/julias-musical-adventures/

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

Josh and his family smile for the camera.

Thank you, Josh

Josh can’t see rain – can you? Josh was born with nystagmus and ocular albinism, but he hasn’t let that hold him back. Josh has been a primary school teacher for 7 years, completed his masters, got grade 8 piano and regularly sings in City of Birmingham Choir at Symphony Hall.

Josh has some very reassuring words for parents: “If you have a child who has just been diagnosed with nystagmus they will be fine. I promise you that you will worry about it and notice it more than they will and they’ll constantly surprise you with how well they cope.”

For his wisdom alone, Josh is a hero, but what he told us about rain made everyone take notice. He said: “I only found out a couple of years ago that people can see rain. I’d always assumed it was invisible to everyone.”

Thank you for sharing, Josh.

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

Jaina smiles at the camera.

Thank you, Jaina

Jaina joined the Nystagmus Network team in August 2020 as an intern, spending some time to gain experience of working in a small charity. Jaina was hugely helpful in the run up to virtual Open Day 2020 and you may have ‘met’ her in our forums.

Jaina says: “A huge thank you for this opportunity, I have thoroughly enjoyed learning about nystagmus and helping the team with the big open day and other events. I have definitely learnt a lot of transferable skills.

“My family donates money for an eye camp in India, where we visited a little village many travelled miles to for free eye care. This was really inspiring and made me more appreciative of healthcare in the UK.”

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

Claire and her young son smile for the camera

Thank you, Claire

Both Claire and her young son, Zac have nystagmus. In 2019 Claire decided she was going to do a sky dive for the Nystagmus Network. Postponements because of the weather and then again this year because of lockdown, meant Claire was waiting nervously nearly a whole year before she could make her leap. But she finally did it in 2020 and raised £420.

Thank you, Claire.

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  

Contact us here to volunteer

Find fundraising ideas here

Please make a donation here

THANK YOU

Joanne smiles at the camera. There is an open piano in the room behind her.

An interview with Joanne

Violinist, soprano, opera impresario and Nystagmus Network member, Joanne Roughton-Arnold chats with Nystagmus Network’s Sue on Saturday 3 October as part of the Nystagmus Network virtual Open Day 2020.

Hear Joanne talk about her experiences of her childhood and offer inspiration to young people with nystagmus dreaming of a career in the performing arts.

Register for all Open Day presentations here