#YouMadeItHappen – Finlay

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Finlay – you helped make that happen!

Today the whole nystagmus community says thank you to you.

A thank you postcard.

#YouMadeItHappen Monday 19 November

At this time of year we like to celebrate all the amazing things you, our supporters, have made happen. Thanks to you, the Nystagmus Network has spent another successful year providing support and information to everyone affected by nystagmus, raising awareness with our annual Nystagmus Awareness Day on 20 June, our publications, website and our many guest speaker appearances and funding not just 1 but 3 brand new nystagmus research projects.

Without your generosity none of this would be possible. Watch our blog, Facebook and Twitter posts this MONDAY as we highlight your greatest achievements this year and say a huge THANK YOU for your support.

True dedication!

Nystagmus Network trustees Claire Brinn and Vicky Pitman and Vicky’s husband, Richard finally completed their abseil for nystagmus research on Sunday, 28 October. They scaled down the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park.

The final 3 of our fabulous team of 10 abseilers finally took their leap for nystagmus, following postponements due to the very British weather.

It was a chilly day, but at least there were no high winds or lashing rain to deter them this time and our courageous trio were all smiles for the camera.

The Nystagmus Network is indebted to all 10 of our abseilers who are all now safely back on the ground: Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky. Together they have raised around £7,500 for ground breaking nystagmus research at Moorfields and UCL.

They did it – at last!

The unpredictable British weather finally came good for our intrepid (postponed) abseilers on Sunday 21 September, when Clare A, Glen and Matt finally completed their abseil from the viewing platform of the ArcelorMittal Orbit for nystagmus research.

With not a cloud in the sky nor any hint of wind and rain, our intrepid 3 enjoyed the experience of a lifetime and helped secure the future of ground-breaking nystagmus research at Moorfields and University College, London.

WELL DONE and THANK YOU!

Congratulations all of you. Now you really can say ‘I got the T-shirt!’.

Nerves of steel!

Four of our six remaining Nystagmus Network abseilers will finally (fingers crossed!) make their leap for nystagmus research this Sunday, 21 October, from the viewing platform at the top of the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park.

Vicky, Tom, Vanessa and Richard B managed to complete their abseil last month.

For the remaining Nystagmus Network team members the abseil was postponed last month, and then again earlier this month, due to high winds and heavy rains – not exactly the ideal weather conditions to be dangling by a rope from the UK’s tallest piece of public art.

So we’d just like to say a huge well done to Claire A, Claire B, Glen and Matt, for keeping their nerve and for continuing to raise sponsorship as they waited for their big moment. Every penny raised is going directly into groundbreaking nystagmus research happening right now at Moorfields Eye Hospital and University College, London.

It’s almost here (we hope)!

Everyone at Nystagmus Network will be thinking of you and the whole nystagmus community will be cheering you on.

Richard P and Vicky hope to make their leap for nystagmus on 28 October.

 

Walk Eye to Eye for nystagmus research

Supporters of the Nystagmus Network and anyone keen to raise money for nystagmus research at Moorfields Eye Hospital and University College, London can now sign up to walk Eye to Eye in March 2019.

The Eye to Eye walk takes a route (you can choose either 4 or 14 miles) from the London Eye on the South Bank of the Thames to the iconic eye sign outside Moorfields Eye Hospital.

Join Team Nystagmus Network for the walk to make sure that every penny you raise in sponsorship goes directly into ground-breaking nystagmus research at Moorfields and UCL.

We’ll be setting off at 11am on Sunday 10 March. Bring the family, bring the dog! Everyone welcome.

Please sign up today!

A Nystagmus Network research workshop

UK Nystagmus Research Meeting takes place

Researchers and clinicians representing nystagmus centres of excellence from Cardiff, London, Plymouth, Sheffield and Southampton gathered in Birmingham on Friday 28 September as guests of the Nystagmus Network ahead of the charity’s annual Open Day to plan the way ahead for collaborative nystagmus research.

Jon Erichsen and Matt Dunn from Cardiff University, Maria Theodorou from Moorfields Eye Hospital, Dominic Burdon from the University of Plymouth, Helen Griffiths and Anne Bjerre from the University of Sheffield and Jay Self and Helena Lee from the University of Southampton met to share outcomes of their recent and ongoing research in a spirit of openness and with a view to forging ahead with ever greater collaborations between the centres in the future.

Also at the meeting were Neil Meemaduma, Head of Research at Fight for Sight and Nystagmus Network trustees from the charity’s research team.

Each team went on to present to delegates at the Nystagmus Network Open Day the following day and chat with families in the Research Hub.

Fight for Sight and the Nystagmus Network were delighted to be able to announce the successful recipients of three new joint funding grants for nystagmus research at the meeting.

Design our Christmas card

At Open Day we announced our competition for children to design the Nystagmus Network 2018 Christmas card. Cards will be available to purchase from early November and will help us raise much needed funding for the charity.

Ben and Charlotte, Lilly, Jack and Rowan are our current front runners, but there’s still time for you to enter your design.

Entrants must be aged 5 to 15 years and have nystagmus. Please scan and email your design to [email protected] or post your drawing to:

Nystagmus Network, 15 Robinia Green, Southampton SO16 8EQ

Closing date: Friday 12 October

Thank you! You were amazing!

Nystagmus Network trustees and staff would like to say a huge thank you to everyone who helped make Open Day 2018 such an amazing day.

Thank you to all our members and other delegates for supporting Open Day, especially those who travelled long distances and had to get up ridiculously early on a Saturday to be with us. Thank you for your positivity, for your unfailing interest and appreciation.

Thank you to the children for taking part in the workshops, for helping their parents with the table activities and, especially, for designing a Christmas card. Much more about that later!

Thank you to our wonderful keynote speaker, Marsha De Cordova MP, who shared her personal nystagmus story and had parents gasping at her experience of being excluded from story time at nursery. Today she champions the rights of every adult and child with vision impairment.

Thank you to the inspirational David Katz, who, having rubbed shoulders with the rich and famous throughout his stellar photography career, was humbled to finally meet so many people who have nystagmus just like him.

Thank you to our researchers and clinicians who brought us right up to date with their work and, mostly, achieved this in language we could all understand!

Thank you to Jennie from Guide Dogs and Ben from RNIB for their informative presentations and for their valuable time and expertise answering delegates’ questions during the day.

Thank you to Roselle from Albinism Fellowship UK for her pop up presentation and for her offers of support to families affected by albinism.

Thank you to Wil, who inspired us all never to let nystagmus hold us back in anything we do.

Thank you to Mike, the fount of all knowledge when it comes to benefits and nystagmus, for his DLA and PIP workshops and for his patience in dealing with enquiries throughout the lunch break.

Thank you to Adventure Plus and Maayan for providing the children with such engaging workshops to take part in. We have some wonderful photographs to share!

Thank you to Wendy and Hazel from Guide Dogs and Tim from Royal National College for chatting with delegates and sharing so much invaluable information.

Thank you to James for the lovely guitar recital at lunch time.

Thank you to our exhibitors: Graham from Aspire, Dave from Dolphin, Rebecca from Humanware and Malcolm from Orcam for introducing us all to the latest technologies to support vision impairment.

Thank you to Jay, Neil and the Istead team for their professionalism in supplying the sound and music and, as always, for their total unflappability.

Thank you to Matt for the stunning photography which we will begin sharing on our website and elsewhere shortly.

THANK YOU EVERYONE! Open Day would not happen without you.