Visual impairment and mental health

Children aged between 8 and 11 years old who live with a visual impairment are three times more likely to develop a mental health problem than children with no visual impairment, according to new research.

The Nystagmus Network has been aware of this for a long time and always highlights the social and emotional aspects of nystagmus with parents and teachers.

Please click the link to read the full article in Optometry Today.

Open Day tickets on sale now!

Tickets for the Nystagmus Network Open Day 2018 go on general sale at midday today. With a packed line up of speakers and presenters, including Marsha De Cordova MP, Shadow Minister for Disabilities and David Katz, internationally acclaimed ‘blind’ photographer, alongside presentations from the UK’s top nystagmus research teams and workshops on education support, benefits, technology and mobility, you won’t want to miss out on the biggest nystagmus event of the year.

Book your ticket TODAY by clicking this link.

Simon in Nystagmus Network T shirt.

Well done, Simon! He did it!

Simon jumped out of a plane for the Nystagmus Network this morning and has raised over £1,000 for the charity!

Fresh back from a family holiday, Simon took to the skies earlier this morning, courtesy of the Red Devils Parachute Regiment Free-fall Team.

Simon’s sky dive was watched by friends and family, his wife, Sara and their children, including son, Charlie, who has nystagmus.

Congratulations Simon!

You can still SPONSOR SIMON HERE. Thank you!

If you’d like to leap from a plane for nystagmus, get in touch today!

James and Thomas’s Summer Challenge

James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart.

James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and the Nystagmus Network. This means an average of 3.8 miles per day consciously walked to get to their target.

Why these charities?

When James was 10 months old he was diagnosed with Nystagmus. He is registered visually impaired as a result.

James was later diagnosed with a very rare genetic disorder called Chromosome 18q-23 distal deletion syndrome.

At least 1 in 1,000 babies are born with nystagmus.

Chromosome 18q- effects 1 in 55,000 births.

Having both is super rare!

So that Chromosome 18 Registry and Research Society Europe and the Nystagmus Network, two tiny charities, can continue to offer support to families just like James’s, please sponsor the boys today.

CLICK THIS LINK TO SPONSOR JAMES. Thank you!

Resources for teachers and parents

The school summer holidays may have only just begun, but for teachers this is the time they think about preparing all those courses and lessons for the new school year.

The Nystagmus Network understands that teachers want to be particularly geared up to support children in their class with nystagmus. That’s why we’ve produced our Teachers Booklet, full of simple hints and tips to make sure that learning is accessible for visually impaired pupils.

Here’s what one teacher says about our booklet:

“I’m about to have a child in my class with nystagmus and have been given the booklet for teachers by his parents. I’ve found it extremely helpful and clear in my preparation for the year ahead. Thank you.”

Download your free document today!

A helping hand with taxes

Did you know that RNIB has a tax team that supports blind and partially sighted people with tax, tax credits and HMRC issues across the UK?

The team, based in Liverpool, is supported by HM Revenue and Customs (HMRC). Mark Rogerson from RNIB’s Tax Advice Service told us how the team makes a difference to the lives of blind and partially people.

We make tax and HMRC issues clearer

We help people to claim extra tax allowances, such as Blind Person’s Allowance and Marriage Allowance, which can reduce your tax bill and these can be transferred and backdated. Our tax service is free, confidential and available to people with sight loss, regardless of their age or income. We can arrange help with form-filling, completing your tax return, claiming a tax refund and resolving problems. We also advise customers about which products and building work are VAT-free, saving them more money.

Since the service started in 2011, we’ve helped over 34,000 people, identified £3 million in extra tax allowances and tax credits.

We make sure people feel supported

We have access to a dedicated team within HMRC for people who need extra help with their tax and tax credits. We help customers who are unable to speak to HMRC directly because of hearing loss, dementia or living in a care home. We also have a fact sheet in different formats with information on tax allowances and useful contacts.

We help customers to use HMRC’s online services

HMRC have introduced the Personal Tax Account, which allows you to manage your affairs with HMRC online, similar to an online bank account, but for tax. But if you can’t get online or the issue is more complex, we can help arrange for an adviser at HMRC to come to your home or meet you at a local venue. It’s about making sure blind and partially sighted people are supported in all their tax-related queries.

You can contact RNIB’s tax team by telephone on 0345 330 4897, emailing [email protected] or to find out more about the service visit rnib.org.uk/tax

The picture shows Mark Rogerson – RNIB Tax Advice Service

Advice from Glen on apps and phone tech

Glen is a VI blogger, friend and member of the Nystagmus Network. Our delegates enjoyed his extremely useful workshop at Open Day last year on building social networks.

More recently, Glen has turned his attention to another of his areas of expertise: assistive technology.

In his latest blog, Glen shares a video follow up explaining how to make the most of your iPhone.

Read Glen’s blog and watch his video here.