News – Page 2 – Nystagmus Network

Congratulations, Dr Thomas

The Nystagmus Network is sending huge congratulations to the newly qualified Dr Nikita Thomas. Dr Thomas achieved her PhD this month.

Nikita is well known to members of the Nystagmus Network for her engaging personality and confident presentations on her latest nystagmus research.

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). She was nominated by the Nystagmus Network and her senior colleagues at the School of Optometry and Vision Sciences, Cardiff University for her innovative work in perimetry.

We’re sure that Nikita has a brilliant nystagmus research career ahead of her. With her PhD behind her she can now concentrate on her post-doctoral career.

Nikita says: “I never thought this day would actually come! I passed my PhD viva and I’m officially Dr Thomas. I was just an average kid at school who raised eyebrows when she chose science at A-levels, and now I’m a fully-fledged scientist. Amazing feeling.”

Congratulations, Dr Thomas!

Gene Vision launches

Gene Vision launched to support those diagnosed with genetic eye diseases

London, 01 December 2020

A new website, Gene Vision, has launched today, developed by Professor Mariya Moosajee and Dr Alex Yeong, supported by Dr Peter Thomas (Director of Digital Innovation at Moorfields Eye Hospital). The new site is intended for adults, children and their families who are diagnosed with rare genetic eye diseases.

The site includes in-depth condition-specific information for patients and their families as well as current research and clinical trials. It will also act as a resource for clinicians and allied healthcare professionals who are diagnosing patients, as well as those in earlier career stages learning about the conditions themselves. In addition, it is anticipated that the site will be used by GPs and other referring specialists so that they can learn more about their patient’s condition quickly and easily, whilst understanding how to provide the best care plan.

Genetic disorders are rare, but together they affect 1 in 25 children in the UK¹, and contribute to more than 60% of blindness among infants worldwide². Inherited retinal diseases are the commonest cause of blindness among working-age adults generating a huge burden for those with the disease and their families.³

“It can be devastating for those receiving rare genetic diagnoses, and frequently patients are not provided with the accurate information they need. Unfortunately, there is also a lack of professional knowledge so patients are not always signposted to relevant resources for information and support, or offered the appropriate investigations, nor information on the latest research and trials, which could really benefit them in the short and long term,” says Professor Moosajee.

“Families deserve to know whether the condition could reoccur in future pregnancies or be passed on to the next generation, or if there are clinical trials they could access. Receiving a genetic diagnosis can cause a great deal of anxiety and worry, hence we needed to develop a trustworthy open-access knowledge resource that complements other credible and accurate information already out there, like the Retina UK website.”

Gene Vision provides in-depth information on conditions and specific genes in a searchable format. There is opportunity to find out about the latest research, external support including specific charities. In addition, an overview of the eye anatomy is provided to give context for those without prior insight.

Gene Vision has been jointly supported and funded by the The National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology and Retina UK, a charity which works for people with inherited sight loss. Key medical charities including Microphthalmia, Anophthalmia, Coloboma Support, Aniridia Network, International WAGR Syndrome Association, Nystagmus Network and others have also inputted on content.

The website has been tested by patients with differing levels of sight loss, who use a range of digital accessibility software and magnification devices, together with parents of affected children and health care professionals. It has also had formal design input by digital accessibility consultants who suffer from genetic eye disease themselves. This website is also mobile friendly and so can be accessed anywhere.

Dr Yeong who led on the project said, “I am really proud of what has been achieved with Gene Vision and I am excited to hear from some of the patients and their families who will benefit from it now.”

References

Jeans for Genes; http://www.jeansforgenes.us.com accessed 17.11.20
Cleveland Clinic; https://my.clevelandclinic.org/health/diseases/17130-eye-disease-inherited–genetic accessed 17.11.20
Liew G, Michaelides M, Bunce C. A comparison of the causes of blindness certifications in England and Wales in working age adults (16–64 years), 1999–2000 with 2009–2010 BMJ Open. 2014 Feb 12;4(2):e004015.

Notes to editors

Professor Mariya Moosajee

Professor Mariya Moosajee is a Consultant Ophthalmologist in Genetic Eye Disease at Moorfields Eye Hospital and Great Ormond Street Hospital for Children. She is a Professor of Molecular Ophthalmology at UCL Institute of Ophthalmology, and Group Leader of Ocular Genomics and Therapeutics at the Francis Crick Institute in London. Professor Moosajee’s current clinical focus is providing a genomic ophthalmology service for children and adults affected with pan-ocular genetic eye disease. She also leads an active research group and is focused on both clinical research, which involves detailed characterisation of patient’s clinical features and natural history studies to understand disease progression and define outcome metrics for clinical trials. In the laboratory, she is advancing our understanding of the molecular basis of ocular maldevelopment and inherited retinal dystrophies. Dr Moosajee is the joint President of the UK Eye Genetic Group, sits on the Education and Academic committees at the Royal College of Ophthalmologists, and is the President of Women in Vision UK.

Mr Peter Thomas

Peter is the Director of Digital Innovation and a Consultant Ophthalmologist at Moorfields Eye Hospital. Clinically, he specialises in paediatric ophthalmology and strabismus surgery. He has been involved in digital health for many years, and his main interest is in driving the digital transformation of eyecare in the UK. His work supports the creation of new models of care, for example the recent deployment of video consultations and home monitoring at Moorfields, that are more convenient and more available for patients. He sits on a number of national committees and boards to drive this process agenda across all of ophthalmology and in the NHS more generally. His current research with the Moorfields’ Digital/Clinical Lab involves the assessment of environmental impact of healthcare, and the creation and implementation of clinically helpful artificial intelligence solutions.

Dr Alex Yeong

Alex is a fifth-year ophthalmology specialist trainee based at the Royal Victoria Hospital in Belfast, Northern Ireland. He graduated from University of Dundee in 2013 and remained there for two years to complete his foundation training. He moved to Northern Ireland in 2015 to commence his ophthalmology training, but spent the past year at Moorfields Eye Hospital in London creating Gene.Vision. Alex has an interest in retinal diseases and has been involved in various research projects, including a Cochrane systematic review on a form of investigative treatment for age-related macular degeneration, he has contributed to the Textbook of Genomic Ophthalmology by writing the chapter on inherited retinal dystrophies under the supervision of Professors Mariya Moosajee and Andrew Webster. He also organised and run a research clinic in Belfast recruiting patients with nystagmus into the 100,000 Genomes Project, which subsequently piqued his interest in genetics and applied to help create the Gene.Vision website. Alex believes that patient care can be enhanced by bridging the gap between patients and healthcare professionals through sharing clinical information in a comprehensive and easily-understood manner. The Gene.Vision website is created around this core value.

About NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology

The NIHR Moorfields Biomedical Research Centre was established in April 2007 and awarded a third five-year term by the NIHR from April 2017. Its purpose is to conduct translational research that is designed to take advances in basic medical research from the laboratory to the clinic, enabling patients to benefit more quickly from new scientific breakthroughs. The Centre is currently one of 20 Biomedical Research Centres that were awarded to NHS/university partnerships with an outstanding international reputation for medical research and expertise, and experience of translating that research into the clinical setting. For further information, please visit www.moorfieldsbrc.nihr.ac.uk/

About Retina UK

Retina UK is a Retina UK is a CIO, Registered Charity Number: 1153851, working for people with inherited sight loss. They fund medical research to understand these complex conditions and speed up the search for treatments and provide information and support services to help more people lead fulfilling lives. Retina UK has funded more than £16.5 million of research into inherited sight loss conditions in its 43-year history. For further information, please visit www.RetinaUK.org.uk.

About Moorfields Eye Hospital NHS Foundation Trust

Moorfields Eye Hospital NHS Foundation Trust is one of the leading providers of eye health services in the UK and a world class centre of excellence for ophthalmic research and education. Our main focus is the treatment and care of NHS patients with a wide range of eye problems, from common complaints to rare conditions that require treatment not available elsewhere in the UK. Our unique patient case-mix and the number of people we treat mean that our clinicians have expertise in discrete ophthalmic sub-specialties.

We treat people in 32 locations in and around London, the south east and Bedford, enabling us to provide expert treatment closer to patients’ homes. We also operate commercial divisions that provide care to private patients in both London and the Middle East.

With our academic partners at the UCL Institute of Ophthalmology, Moorfields is recognised as a leading centre of excellence in eye and vision research. Together we form one of the largest ophthalmic research sites in the world, with the largest patient population in Europe or the USA. We publish more scientific papers than any other eye and vision research site and have an extensive joint research portfolio.

About UCL Institute of Ophthalmology

The UCL Institute of Ophthalmology (UCL IoO) delivers innovative ophthalmic research and education in partnership with Moorfields Eye Hospital. UCL is ranked eighth in the QS 2020 World University Rankings and rated as the top UK University by research strength. According to the 2017 Centre for World University Rankings, UCL IoO is the best place in the world to study ophthalmology. Part of the Faculty of Brain Sciences, UCL IoO attracts researchers and academics of the highest international calibre. The institute works with education institutions and hospitals around the world to help raise teaching standards and train the next generation of eye and vision health experts. For further information go to: https://www.ucl.ac.uk/ioo/

About UCL
Founded in 1826, UCL was the first English university established after Oxford and Cambridge, the first to admit students regardless of race, class, religion or gender, and the first to provide systematic teaching of law, architecture and medicine. It is among the world’s top universities, as reflected by performance in a range of international rankings and tables. UCL currently has almost 29,000 students from 150 countries and in the region of 10,000 employees. For further information, please visit: www.ucl.ac.uk.

Helen Khan

Communications Manager

NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology

Sight Loss Sector Charter launches at the Visionary Annual Conference 2020

The Nystagmus Network has joined Visionary as a national member and Sue has been attending the virtual national conference this week. Today marks the official launch of a new Sight Loss Charter which the Nystagmus Network is proud to sign up to.

Official press release from Visionary

A new Sight Loss Sector Charter has been launched at the Visionary Annual Conference on 19 November 2020.

Visionary have taken the lead on bringing local and national sight loss charities together to develop a unique Sight Loss Sector Charter which outlines how we can work together and how we should behave towards each other.

Background

Some members of the Visionary Members Consultative Group (Robert Cooper, Director of Community Services at Henshaws and Hayley Grocock, CEO of Wakefield District Sight Aid along with Fiona Sandford, CEO of Visionary) developed a Sight Loss Sector Charter which then went out for consultation to the Visionary membership of local and national sight loss organisations.

Ethos

The charter puts blind and partially sighted people at the heart of the work of charities in the sight loss sector. It also nurtures a stronger sight loss sector by highlighting the importance of collaboration and the building of positive relationships based on mutual trust and respect.

Fiona Sandford, CEO of Visionary said, “Sight loss charities may have their own documents about ways of working and behaviours, but the Sight Loss Sector Charter complements these as its purpose is to build a more collaborative sector. I hope organisations will adopt the charter and use it at the core of their work and in their inductions of staff, trustees and volunteers to show that when people join an organisation, they are part of something bigger – they are part of the sight loss sector.”

Call for action

The Sight Loss Sector Charter is a practical document which local and national sight loss charities can incorporate into their daily work and when collaborating with each other. The call to action for the charter is to “Find it – Read it – Use it”! Email us at [email protected] and tell us how you are using the charter.

[See attached charter.]

Ends

For enquiries, contact Sarah Halliwell, Strategic Projects Lead [email protected] / 07811 413481

Notes to editors

Visionary is a membership organisation for local sight loss charities. Our Vision is for a world in which people living with sight loss can access the services they need at a local level where and when they need them. Our Mission is to develop a strong national network of good quality local sight loss organisations, covering all parts of the UK, to help achieve this.

Visionary Home

Read the Sight Loss Sector Charter here

Thank you to National Lottery players

Thanks to the generosity of National Lottery players, the Nystagmus Network is in receipt of a further grant to support the work of the charity.

This welcome additional funding is enabling us to continue delivering support and information services to the nystagmus community, albeit virtually.

Charity staff are busier than ever answering enquiries by phone, email and on social media and now host monthly zoom get togethers for people living with congenital or acquired nystagmus and parents of children and young people.

There’s no need to feel anxious, alone or uninformed. We’re still here for you thanks to the National Lottery Community Fund.

#CommunitiesCan

Find out more about our virtual get togethers here

In the video, Nystagmus Network Chairman, Tim, thanks National Lottery players and the nystagmus Community.

Congratulations, Nikita

On World Sight Day 2020, the Nystagmus Network is delighted to celebrate the achievement of Nikita Thomas who has been named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness).

Nikita, who works in nystagmus research at the University of Cardiff, was nominated by the Nystagmus Network and has achieved her award in the ‘Innovators’ category.

Innovators embrace new ideas and create new possibilities and outcomes. They challenge the status quo and push the boundaries of knowledge to develop new approaches, systems or appropriate technologies in eye health.

Cited for her innovative developmental work in the field of perimetry, Nikita says: “I have a deep-rooted passion for creating solutions that promote equality of access to standard optometric and ophthalmic clinical practices across different patient groups. This has involved transforming the commonly used method of visual field testing into a method that allows for accurate examination of the visual field in patients with voluntary and involuntary unstable fixation, such as nystagmus. I love that my role offers the freedom and flexibility to fully explore my own concepts and ideas, as well as the potential to make a worldwide impact on established clinical procedures.”

The Nystagmus Network added: “Always engaging, professional and knowledgeable, Nikita Thomas is a very popular research delegate at the annual Nystagmus Network Open Day and a poised and eloquent presenter when delivering presentations to members of our patient group.”

Her academic supervisors at The School of Optometry and vision Sciences at Cardiff University said: “Nikita’s work promises to have a significant impact on both the delivery of clinical eyecare and our understanding of the development of the human visual system.”

Congratulations, Nikita!

Read Nikita’s full IAPB citation here

2 distance shields alongside 2 Nystagmus Network logos.

Please give me space

Now that lockdown measures are easing, lots of people, including those who are shielding for health reasons, are keen to ensure that social distancing guidelines continue to be followed.

Some blind and partially sighted people are concerned about difficulties with maintaining social distancing and are sometimes even resorting to not going out. If you have nystagmus it can be challenging to judge distances.

That’s why RNIB have worked with the Cabinet Office to develop a series of optional Please give me space badges you can print, wear or show on your phone. The idea is that people will immediately understand that you need space, but may find it difficult to maintain, so will help you by keeping their distance.

Find the badges on the government website here.

The Distance Aware initiative

Similarly, the new Distance Aware initiative is also welcome news. Using a series of distance ‘shields’, it enables individuals and organisations to politely prompt ongoing distancing and respect of individual social space. The scheme has recently been endorsed by the Department of Health and Social Care to promote the ongoing need for distancing. Also supported by the Welsh Government, the badge and poster templates are available to download here.

5 different distance aware shields. Each is a different colour with a chevronned border and in the centre a 2-way arrow indicating distance. Image includes logos of the Dept of Helath and Social Care, NHS Wales and the Welsh Government.

The Nystagmus Network hopes that the two schemes will help people living with nystagmus and low vision to stay safe, maintain their quality of life and continue to enjoy their independence.

Dan Williams crouches beside his guide dog, Zodiac.

‘Rip Off Britain’ air Dan’s story of Uber refusals

A man from Cardiff is taking Uber to court over claims they refused to pick him up with his guide dog on more than 100 occasions.

Cardiff-based entrepreneur, Dan Williams is bringing a case against the company after he claims they regularly refuse to pick him up with his dog, Zodiac.

Dan, who is registered blind as he is gradually losing his sight due to a condition called retinitis pigmentosa, claims over the past two years he has regularly been turned down for journeys.

He said it often causes him to miss or be late for appointments and has affected his business reputation.

Dan said: “A regular scenario is that I book an Uber ride and on arrival, the driver either spots me and Zodiac and drives off or pulls up and refuses to allow us into their car.

“I always remain calm and professional and explain that it is illegal under UK law as a guide dog is classed as a mobility aid, just like a wheelchair.

“I then started to message drivers to inform them that I have a guide dog which resulted in cancellations and would often message two or three drivers before one would actually accept the job.”

During a two-week period, Dan said he had ordered 10 Ubers and was refused access six times, leaving him feeling “mentally drained, exhausted angry [and] frustrated”.

He often travels to carry out training for organisations and workplace assessments for employees with sight loss through his social enterprise, Visualise Training and Consultancy.

Dan said he decided to take legal action to stop similar incidents happening to other blind or partially sighted people and says he has also considered giving up Zodiac.

Dan said: “Having Zodiac has transformed my life over the past two years and he’s become my best friend, but at times like these I really start to wonder if I should hand him back to Guide Dogs and revert to using a white cane to avoid all the anxiety and inconvenience caused by Uber drivers.”

Specialist disability discrimination lawyer Chris Fry, of Fry Law, is handling Dan’s case.

He said: “I’m very hopeful that together, we can make a positive impact on the taxi sector as a whole that will benefit the 2 million people living with sight loss in the UK.

“We think that Uber hanging its drivers out to dry shows an abrogation of responsibility. They are the service provider and are therefore responsible for providing an Equality Act compliant service.”

The Equality and Human Rights Commission are supporting the claim.

A commission spokesperson said: “Transport operators have clear responsibilities in law to help disabled people travel freely, but often they are failing to meet them.

“We are funding Mr Williams’ case and others, to encourage improvements to the transport industry’s policies and practice so that the needs of disabled and older people are key considerations in the current and future design of public transport.

“Disabled people and older passengers must be able to enjoy public transport just like everybody else.”

Proceedings were issued in the County Court at the end of April and Dan’s counsel is waiting to receive the sealed documents back.

They intend to apply to the court to stay the case (suspend the case partially or fully) pending the outcome of a separate Supreme Court case, which they anticipate will be by the end of the year.

The Supreme Court is due to hear a case in July surrounding the status of Uber’s drivers, with the firm arguing they are self-employed.

In an email sent to Dan on May 11, an Uber spokeswoman said: “It is totally unacceptable for drivers to refuse to take a guide dog and we investigate every report.

“Licensed private hire drivers must carry service animals in their vehicle. We highlight this obligation to all drivers before they start using the Uber app and often send reminders.

“Any driver who is found to have refused to take a service animal will permanently lose access to the app.”

Uber have been approached several times by WalesOnline for a comment.

Article source: Wales Online

Dan’s story was highlighted in the BBC consumer programme, Rip Off Britain. You can watch the episode using the link below.

Watch Rip Off Britain on BBC i-player here

Richard Osman to voice Radio 4 appeal

The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.

The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.

Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.

Hear Richard talk about the Nystagmus Network here

The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.

Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.

The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”

Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.

The appeal will be broadcast on Sunday 5 July at 07.54 and at 21.25 and again on Thursday 9 July at 15.27 on BBC Radio 4

DAB BBC Radio 4
FM 92 – 95 FM, 103-105 FM
LW 198 Long Wave.

Picture of Richard Osman courtesy of Penguin Books

Please click here to donate to the appeal – thank you

Happy Anniversary, Visualise!

Dan Williams takes a look back over the past 6 years and how his business has evolved.

I can’t believe it’s been 6 years since I founded Visualise and as with all new ventures, it’s been a rollercoaster but my positivity and love for what I do has kept me moving forward.

When I was at school I never thought that I’d amount to anything because of my sight loss and the bullying didn’t help either, but I now realise I can achieve anything if I put my mind to it, just in a different way to most people.

The challenges I overcame made me stronger each time and gave me the confidence to keep developing new ideas; if something didn’t work, I’d learn from it, adapt and try again.

Visualise Training and Consultancy is now a successful social business which empowers all types of organisations to be visual impairment confident and improve the lives of thousands of people throughout the UK living with blindness or partial sight.

My message to anyone facing barriers is to give things a try as the chances are that you’ll achieve your aims, perhaps not first time, but with determination and hard work, you can get there if you believe in yourself and keep pushing forward.

The following BBC video was made just after I set up the business and I hope it inspires you to keep striving for whatever is your passion.

Here’s the link

Keep positive and stay safe,

Dan

Dan Williams became a trustee of the Nystagmus Network earlier this year.

Does nystagmus or ocular albinism affect my immunity?

Lots of you are asking us this question and some of you have received notification letters from the government.

We asked for expert clinical advice and received the following statement:

“IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity.

“There are some syndromic forms of albinism that are associated with immunocompromise and these patients would already be aware of this and/or have been notified by the UK government that they are in the vulnerable group.”

Whether or not you have nystagmus, please remember to follow scrupulous hygiene practices, including thorough hand washing, whenever inserting, removing or cleaning your contact lenses as we understand that the coronavirus can enter the body through the eyes.

If you wear glasses or sunglasses, please wash these regularly using non abrasive soap – we find washing up liquid does the trick.

If you are registered sight impaired (SI) or severely sight impaired (SSI) you can ask to use priority shopping times and online supermarket delivery slots.

Keep asking us you questions. We will find the answers for you.

Say safe and well