Category: Charity highlights

Merry Christmas everyone!

Merry Christmas everyone!

It’s been a very busy year at the Nystagmus Network with lots taking place! Our Chairman Richard has a short Christmas message he would like to share with you all – please click on the image below or the link here to watch it.

Thank you for our support in 2016!

Finally, we would like to say a big thank you to everyone who has supported the charity in 2016. We have big plans for next year which we hope will make a massive impact on everyone in our community!

Have a great day and a very Merry Christmas from everyone at the Nystagmus Network!

Steve McKay announcement

It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon.  Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December.  Steve has been a highly-valued Trustee with the Nystagmus Network since 2009 and was responsible for our public relations and social media engagement.

He has made a huge contribution to the charity with his commitment and dedication and his seemingly boundless enthusiasm. At many of our Open Days Steve would astound everyone with his stories of daring escapades in the west country, including driving tractors and having a good go at a range of sports. He was a role model in never letting nystagmus hold him back.  Most importantly for the nystagmus community, it was Steve who came up with the notion of “Wobbly Wednesday” and who saw the potential of an annual awareness day for nystagmus that mixed serious messaging with a strong element of fun and celebration.  He recently shared a video blog with everyone about his love of photography – another of his many talents.

The Trustees and staff of the Nystagmus Network and everyone in the wider nystagmus community will miss Steve very much and our thoughts are with his family at this time.  His inspiration and zest for life and his determination not to let his visual impairment get in his way will live on, especially as Wobbly Wednesday continues to grow year-on-year. Below is a short tribute video to Steve.

Steve’s funeral will be held on Wednesday 21st December at 11.15 at All Saints Church, Highweek, Newton Abbot, followed by refreshments at the Highweek Inn. Family flowers only with donations going to the Nystagmus Network, either by sending a cheque payable to “The Nystagmus Network” to Zealleys, Funeral Directors of 17 Devon Square, Newton Abbot, Devon. TQ12 2HR, or direct via our Just Giving page here.

Peterborough Community Radio interview

This week the video blog at the Nystagmus Network features our very own Sue!

The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.

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Meet our new Nystagmus Network volunteers!

Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model.

The charity was inundated with applications, ranging from adults with nystagmus to healthcare professionals. Following a short review, we are delighted to announce that the following people will be joining the Nystagmus Network as volunteers:

  • Rachel Thomas who is a parent to a child with nystagmus
  • Elizabeth Jones who has recently qualified as an Orthoptist
  • Nikki Espiner who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
  • Jenny Rose who has acquired nystagmus associated with ataxia
  • Julie Stewart who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
  • Jamie Chapman who has congenital nystagmus
  • Sara Riggs who is a parent to a child with nystagmus
  • Penny Marsh who moderates the Nystagmus Network Facebook group and is a parent to a child with nystagmus
  • Leanne Leung who is an optometry student entering the second year at MCPHS University
  • Jen Martin who is based in Canada and will help us signpost families from North America to the appropriate support services and to offer advice

“Volunteers help us support our community!” – Richard Wilson, Chairman of the Nystagmus Network

How to contact our volunteers

Each of our new volunteers will play an important part in the work we do at the Nystagmus Network. They will be a direct link to the nystagmus community and they will be the main contacts for our new call back service the charity offers which can be accessed here.
Along with being very active on social media (such as our charity Facebook page) they will also use their experience and expertise to respond to queries submitted through our website here.

The benefits of our volunteers

One of the main benefits of this volunteer service is that anyone who contacts the charity will be able to speak with someone who completely understands their own personal situation. This means that an adult with acquired nystagmus will be able to speak to another adult with the condition, while a parent to a child with congenital nystagmus will be able to speak with another parent. Through this new peer-to-peer support model we believe we will be able to better support the nystagmus community.

We hope you will join us in welcoming all ten of our volunteers to the charity and we are sure they will make a big difference! If you have any questions about our volunteer service you can get in touch with us here.

Have a great day from everyone at the Nystagmus Network!

Fundraising for the Nystagmus Network

Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she was eight weeks old and they want to help the charity and other families in any way they can.

Everyone at the charity would like to say a big thank you to Paula and Gavin and if you would like to make a donation to their event you can do so here http://www.justgiving.com/nystagmusroyalqueenfc.

Check out our new nystagmus booklets!

One of our main objectives at the Nystagmus Network is to provide information and support to the nystagmus community. To achieve this we have been working hard reviewing all of our documents to make sure they are up to date, readily available and appeal to a wide audience.

Not only have we have produced brand new leaflets on nystagmus which we are busy posting out to eye departments across the country, we have also made all our publications for adults, children, parents and teachers free to download from our online shop here.

We want to make sure that everyone receiving a nystagmus diagnosis will know they can turn to the Nystagmus Network for support! If you can’t find any of our new leaflets at your local eye clinic, please let us know by clicking here and we will get in touch with them.

Wide range of topics

These documents cover a wide range of topics from font size to friendship, from coordination to confidence. Whether your nystagmus was diagnosed when you were a baby or you’ve only just discovered that you have nystagmus, the Nystagmus Network is here to support you.

One of our most popular documents is the newly updated ‘Wobbly Eyes’. The first incarnation of this booklet was produced back in the 1990s to explain nystagmus to a child and help them and their parents and teachers come to terms with the condition. The brand new version serves exactly the same purpose and has been designed to appeal to a child, gently outlining what it means to have nystagmus.

“As a QTVI I always recommend the Nystagmus Network to parents and schools where pupils have nystagmus. Great work at getting information out there.” – Janet

There’s more to come!

But we’re not stopping there! There’s much more to come. Your help in the form of membership subscriptions (you can sign up here), fundraising and donations, means that we will be able to continue our important work.

We’ve already begun drafting a brand new book, with the working title ‘Nystagmus explained’. Written very much in plain English and layman’s terms, this book will cover the more medical aspects of nystagmus such as diagnosis, causes, heredity and lifelong effects. It will serve to explain some of the clinical terms you may hear from your ophthalmologist and give you the confidence to engage in discussions with them.

Far from being sent home with just that one word ‘nystagmus’ ringing in your eyes, our publications will empower you to take control, build your knowledge and manage your life with nystagmus.

“Brilliant. Thank you. Been trying to explain things to my six year old” – Marilena

Sue’s journey at the Nystagmus Network

Our second video blog has been recorded by Sue Ricketts. Sue has been involved with the Nystagmus Network for many years and joined the charity as the Communication and Development Manager in 2015.

In the vide Sue talks about her involvement with the charity and how she has seen it grow in strength over the last twenty years!

Remember to keep checking back for the latest post!