Month: September 2018

Little Amber – there to help

Nystagmus Network’s Rachel, writes:

Here at the Nystagmus Network we’re always looking for new opportunities for our members. Recently we came across a charity awarding grants to blind and partially sighted children for music lessons.

The Amber Trust offers grants for singing or instrumental lessons, music therapy and concert tickets to children aged 5 and over. They also offer ‘Little Amber Music Awards’ for under 5s. As a parent of 3-year-old twins with nystagmus, this was particularly interesting to me!

Both my boys have shown a keen interest in music from a very young age. They spend a large part of each day singing, playing their toy guitars and putting on ‘shows’ for their little sister.

We applied for the grant for both boys and heard back within a couple of weeks that they have been successful. We’re now very excited for their first interactive session. They’ll now receive 4 sessions a year until they turn 5, as well as some tips and suggestions for activities we can do at home in between.

We will keep you posted!

Another Nystagmus Network first!

Thanks to Paul Bowry and his family, the Nystagmus Network will be enjoying our first ever fundraising Car Boot Sale on Tuesday 18 September.

Paul has been running boot fairs at the site in Essex for some time. Following his grandson’s nystagmus diagnosis, Paul decided to negotiate a charity collection with the organisers at one of their events.

This proved so successful that Paul decided to take the next step and seek permission to hold a dedicated charity event, with all proceeds going to the Nystagmus Network and a local group setting up a sensory room for children with multiple disabilities.

If you’re in the Essex area, please go along to support Paul. Anyone with nystagmus is guaranteed free entry and a very warm welcome from Paul!

#notyourusualnightout

Here’s a fundraising opportunity with a difference!

You can choose to cycle a 50k or 100k route around London, Bristol, Glasgow or Liverpool AT NIGHT with Nightrider 2019.

Provided you book your own place before 31 December, the registration fee is just £75. Then, simply set up your Justgiving page linked to the Nystagmus Network as usual and every penny you raise in sponsorship after that will come directly to the charity.

Let us know when you’ve secured your place. We’re here to support you!

Nystagmus acquired after a stroke?

Professor Fiona Rowe from the Institute of Psychology, Health and Society at the University of Liverpool is currently seeking patients to take part in an online anonymous questionnaire about eye movement disorders.

An expert in post stroke vision, Professor Rowe would like to recruit adult patients with acquired nystagmus to help determine future patient treatment and care.

If you would like to find out more about the questionnaire, please click here.

Don’t forget us, please!

As national ‘Remember a Charity Week’ begins, the Nystagmus Network would like to make a plea to all our members and supporters to consider remembering us in your wills.

We understand that your family and friends must always come first. All we ask is that, once you have looked after those closest to you, you think about leaving a gift towards our work. One day your gift could lead to a cure for nystagmus. What better legacy could you leave to future generations?

How do I leave a legacy?

If you would like to leave a legacy to the Nystagmus Network, you will need to include in your will the full name of the charity, our registered charity number and our official address.

The details are:

Nystagmus Network, registered charity number 803440

15 Robinia Green, Southampton, Hampshire, SO16 8EQ

Please let us know if you intend to remember us in your will. We would like to acknowledge your thoughtfulness and it will help us to plan for the future.

Thank you.

 

Matt is joining the abseil

Matthew Dawson will be abseiling down the UK’s allest piece of public art on 23 September to raise much needed funding for nystagmus research at Moorfields and UCL. He is joining Team Nystagmus Network Abseil at the suggestion of his wife and for his young son, Owen, who has nystagmus.

Apparently, some of Matt’s sponsors have asked him to wear fancy dress for the abseil. Maybe he will if his sponsorship total gets high enough!

Please sponsor Matt if you can.

Harry and his sister ready for school.

Guest post: Harry’s back at school!

Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, Ian, how Harry is getting on, 4 weeks after his operation.

Ian writes:

“Harry’s eyes are now nothing but a slight irritation and, apart from eye drops 4 times a day, he doesn’t need any pain relief. Other than a bit of redness around the edges, his eyes show very little sign of the trauma they’ve been through. Harry says they’re still itchy. This is because the stitches still haven’t dissolved and they won’t until around 8 weeks post op.

“Harry’s vision is on a par with pre-op which is really pleasing. He still needs to wear glasses, but now minus the prisms.

“We attended a meeting yesterday with the consultant. 4 weeks post op he was delighted with the healing process (Harry is about 80% through the recovery) and with the results of the operation. I have to say my wife and I and, even more importantly, Harry are delighted with the outcome, too. Harry doesn’t need to see the consultant for 6 months now, so, in effect, he’s signed off.

“The photo was taken the day before his meeting with the Consultant, his first day back at school. You will see he’s looking straight at the camera.

“Even though we had taken our time and researched and thought we knew what to expect, seeing your child going through this surgery is tough. The first few days, in particular, are not nice. There’s the uncertainty over the success of the operation and the torment of seeing your child suffering (Harry was a very good patient). On the Sunday after the operation, when Harry expressed some concerns, we found it really difficult. You start doubting whether you’ve made the right decision and question whether it would have been better to leave well alone. So I don’t want to make it sound likes it’s been a walk in the park, it really isn’t. However, when you see photographs like this, with a beaming smile looking straight at the camera then it does make it feel it was worthwhile.

“Whilst this has been a roller-coaster of a journey, we’re so pleased we have done this. I also know this won’t work for everyone. I just hope Harry’s experience can help others, considering this course of action, understand just what it entails.”

The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience. We are grateful to Ian and Harry for sharing their story so generously with us and we wish Harry well as the new school term begins.