nystagmus research – Page 9 – Nystagmus Network

Are you in the team?

Team Nystagmus Network will be setting off to walk Eye to Eye at 11am on Sunday 10th March. You can choose to walk the 4 or 14 mile route.

Team Nystagmus Network sets off at 11am

Nystagmus Network trustees will be at the starting point to wave you off.

Ella and Sam are on the team, here’s why:

“Sam and I will be walking in the hope that the money we raise will fund life-changing research for those of us living with nystagmus and the future generations the Nystagmus Network will support.”

Set up your Justgiving page

Click here to join the team today then set up your Justgiving page and link it to the Nystagmus Network to ensure that every penny you raise goes to nystagmus research.

THANK YOU!

Fancy a stroll through London?

At 11am on Sunday 10 March 2019 we’re planning the biggest nystagmus community get together of the year. Team Nystagmus Network will be taking part in the Eye to Eye Walk between the iconic London Eye on London’s South Bank to the equally famous and symbolic eye sign outside Moorfields Eye Hospital.

Please join us.

We’re doing this to raise much needed funding for ground breaking research into nystagmus at Moorfields and University College, London.

You can choose to take the 4 mile or the 14 mile walk. It’s up to you.

To walk with Team Nystagmus you need to set off at 11am.

Bring the family, bring the dog and help the nystagmus cause by raising lots of lovely sponsorship.

Please set up a Justgiving page for your sponsors and link it to the Nystagmus Network.

Registration is now open. It’s free for accompanied children under 16 and is just £20 for the 14 mile route and £15 for the four mile route. We suggest a minimum sponsorship of £100 for every participating adult.

Moorfields will supply:

Route maps
T-shirts for every participant
Fundraising support
Refreshments, medal, goodie bag and celebration at the end of the walk at their brand new Ect Venue, (Belvedere Road, London, SE1 7PB) next to the London Eye!

Please sign up today!

Proud of our track record

The Nystagmus Network has been funding nystagmus research since the 1990s and, thanks entirely to the generosity of our members, fundraisers and supporters, we continue to do so today and into the future.

Thanks to your support, our research teams have better diagnostics and a better understanding of nystagmus and how it will impact life in the future.

They are beginning to develop effective treatments to lessen the worst of the symptoms.

The next phase is to work on prevention and, ultimately, cure.

Could you walk from Eye to Eye for nystagmus?

Please join us.

We’re doing this to raise much needed funding for ground breaking research into nystagmus at Moorfields and University College, London.

You can choose to take the 4 mile or the 14 mile walk. It’s up to you.

Bring the family, bring the dog and help the nystagmus cause by raising lots of lovely sponsorship.

Moorfields will supply:

Route maps
T-shirts for every participant
Fundraising support
Refreshments, medal, goodie bag and celebration at the end of the walk at their brand new Ect Venue, (Belvedere Road, London, SE1 7PB) next to the London Eye!

Please sign up today!

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.

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.

The Eye2Eye walk for nystagmus research

In partnership with Moorfields Eye Charity, the Nystagmus Network is recruiting a team to take part in the Eye2Eye walk from the London Eye to the iconic eye on the front of the Moorfields Eye Hospital building. The walk takes place on Sunday 10 March 2019 and you can choose to walk 4 or 14 miles. Bring the children, bring the dog! Have a great day out and help us raise lots of money for nystagmus research at Moorfields and University College, London. To apply, please email us at [email protected] or call 01427 718093.

Research funding will use iPads to identify the best method to manage nystagmus

Fight for Sight and The Nystagmus Network have announced funding for three exciting nystagmus research projects at the Nystagmus Network Conference, which is taking place today during National Eye Health Week 2018.

In total £30,000 in funding will be used for projects bringing benefits to children and adults living with the condition, which is characterised by involuntary and repetitive movements of the eye.

James Self at University of Southampton will be developing a new clinical test using an iPad app to measure a patient’s ability to identify faces in a crowd, one of the challenges of nystagmus. The aim is for the app accurately and effectively to diagnose patients and ensure they are offered the most appropriate support for their nystagmus.

Dr Matt Dunn from Cardiff University is being funded to research an improved diagnostic technique for nystagmus in children. Until now the challenge for patients has been keeping their eyes still while the test is performed. Dr Dunn will investigate a new technique that can be used while the eye is also moving, which could improve the earlier diagnosis of this condition in future.

Dr Mervyn Thomas from University of Leicester has been funded to investigate how nystagmus affects the clarity of vision of children living with the condition. The results from this study could directly impact the care and management of very young children with nystagmus.

Dr Neil Ebenezer, Director of Research, Policy and Innovation at Fight for Sight, said: “We are delighted to continue our long-lasting partnership with Nystagmus Network. Nystagmus is a condition which affects an estimated 1 in every 500 children in the UK, so we hope that funding these three research projects will directly benefit patients living with nystagmus.”

Vivien Jones, President and Founder of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “We are absolutely delighted to be making these awards to research centres in the UK. We hope the three research projects we are funding together with Fight for Sight will make progress in terms of improving diagnosis and prognosis, predicting future vision in infants and young children with nystagmus and developing a vision test that can be used in clinical trials of various therapies. All these projects fit our test of improving quality of life and we are very pleased to be able to support them.”

The Nystagmus Network nystagmus research conference is taking place today.

They did it!

Although the Team Nystagmus Network / Moorfields Eye Charity fundraising abseil at the ArcelorMittal Orbit couldn’t go ahead on Sunday morning as planned due to heavy rain and high winds, Vicki and Tom took advantage of some available slots on Saturday morning and took their leap for nystagmus research then.

Congratulations, Vicki and Tom! You’re amazing!

The rest of the team are just waiting for confirmation of their new date for their abseil which will be some time in October. we’ll keep you posted.

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.