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.
Our video this week focuses on Wobbly Wednesday and why your support is so important! It helps us raise awareness of nystagmus and make it the topic of discussion for the day.
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:
“Volunteers help us support our community!” – Richard Wilson, Chairman of the Nystagmus Network
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.
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!
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.
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.
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
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
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!
We are delighted to announce that the Nystagmus Network is launching its new blog! Check out the video above which gives you all the information you will need about what we are hoping to achieve through the blog.
Remember to keep checking back for the latest post!
With just four months to go until the biggest day of the nystagmus calendar, Wobbly Wednesday 2016, it’s time to launch our brand new campaign – “What will you Wobble?”
All you have to do is think of something that wobbles – it’s not that tricky.
You could have a wobbly tooth, or you might wobble when you try to walk in high heeled shoes. Then there’s the Millennium Bridge in London. That was pretty wobbly for a while. There are lots of toys that are wobbly. What about your favourite Subbuteo football team or Weebles – they wobble!
So now we’ve got you thinking about the best thing to wobble, the next step is to take a photo or video clip and send it in to us here or upload it to social media with the #wobblywednesday hashtag.
We are asking everyone who takes part in our “What will you Wobble?” campaign to make a donation to the charity and to use the text below when sharing their photo or video clip.
As part of the “What will you Wobble?” campaign the charity will choose the best video and photo. The winners will recieve a small prize!
If you are in need of some inspiration to take part in the “What will you Wobble?” campaign there will be lots of ideas and things to download from the special Wobbly Wednesday page on our website very soon.
We’ll be posting all the best pictures and details of all the best events planned here too, so please keep looking and check if there is something in your area you can join in with.
We look forward to everyone getting involved with Wobbly Wednesday!
Garden lovers had a rare opportunity this weekend to visit the picturesque gardens of a Wiltshire country estate and help people affected by nystagmus.
On Sunday 12th June Fonthill House, near Tisbury, was opened to the public from 12 – 5pm with proceeds from the event going to the Nystagmus Network. The gardens themselves cover approximately 12 acres, comprising both formal gardens and also an extensive woodland garden, which have been redesigned and redeveloped since 2006.
Lord Margadale currently opens the gardens only three times a year for various good causes and decided to open them for the Nystagmus Network because one of his workers (James Kirk) has a young son with nystagmus. Debbie Kirk, wife to James and mum to Ryan, helped organise the event. She was delighted that it was a success and raised over £2,000 for the Nystagmus Network.
We would like to say a big thank you to James, Debbie and Ryan for holding such a successful event! The money they raised will make a big difference to all the work we are doing supporting the nystagmus community and the new projects we have planned. If you would like to hold an event or make a donation to the charity please get in touch with us or visit our Justgiving page here.
Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.
Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.
The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.
Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.
