IN-vision was set up in April 2010 and became a Charitable Trust, recognised by the Charity Commission in May 2011. The Trust was started by the parents of an infant diagnosed with Infantile Nystagmus (IN) aged three months. It was a diagnosis which brought many more questions than answers and exposed a real need for consistent expert information and advice, easily accessible to all.
It seemed that IN had an unjustifiably low profile and research into the condition was (and still is) hampered by lack of funding. IN-vision was created to try to change this with aims to raise awareness of the condition, its affects on visual acuity and quality of life, while being utterly dedicated to increasing knowledge and furthering research that will one day lead to a cure.
London 2012 Paralympic Champion Naomi Riches MBE, is the charity’s first Patron. IN-vision is incredibly grateful to have the support of Naomi, who has injected great energy and drive into raising awareness of infantile nystagmus and raising much needed funds.
Commenting on her Patronage, Naomi said: “When I found out about IN-vision I immediately wanted to get involved as I was diagnosed with Nystagmus when I was just a few months old. Infantile Nystagmus is surprisingly common yet not enough is known about it, how and why it happens, and how it will affect the lives of the people with the condition as well as those around them. Out of all the charities I work with this is definitely the one that is the most appropriate to me and being asked to be a Patron is just so special.”
IN-vision is run by its Trustees who work voluntarily. Together, they are responsible for the general control and management of the charity and the delivery of our charitable objectives. They plan the strategic development and are responsible for policies and work of the organisation. Their roles are to ensure that the charity complies with charity law, that it remains true to the charitable purpose and objects set out in the governing document, and to be the charity’s advocates and ambassadors.
There are currently four Trustees who have a range of business, financial and management experience.
If you share our passion to make a difference to those suffering with Infantile Nystagmus, and would like to volunteer to help the Trustees in their work, or even forward yourself to join our team, please get in touch.
The Trustees are supported by a Research Advisory Panel. The role of the panel is to provide expert guidance to the organisation, including recommendations of research projects which merit our grant support and monitoring the outcomes. Our panel members have access to the expertise of an outstanding group of peers from whom we can seek advice as required.
We are fortunate to have secured the commitment of Prof Jon Erichsen, and Mr Jay Self. Jon is our first Scientific Adviser (SA) and Panel Chair and is a Senior Lecturer in Optometry and Vision Sciences at Cardiff University. More information about Jon is available here. More information about Jay and his work is available here.
Jay Self, is our first Medical Adviser on the RAP, Consultant Paediatric Ophthalmologist at the University Hospital in Southampton.
He is a specialist in paediatric eye problems and spends half his week in this NHS role and half as a Senior Lecturer/Researcher at the University of Southampton. He completed his PhD in 2009 and has trained in Southampton and Manchester. He has three children of his own and is passionate about helping children with eye conditions and has a particular research interest in genetics and nystagmus. Jay combines clinical and laboratory research in order to identify the causes of nystagmus and study potential treatments. He shares the IN-vision belief that children and adults with nystagmus should receive a minimum standard of clinical care and investigation.
Jay is keen for patients and families with nystagmus to contact him directly if they are interested in participating in nystagmus research jes3@soton.ac.uk
Rebecca McLean (MSc, PhD) is a Research Associate working in the Ophthalmology Group at the University of Leicester.
Rebecca has worked in the field of nystagmus for many years and one of her main roles is running clinical trials for potential treatments for nystagmus. Over the years, Rebecca has been in contact with numerous people with nystagmus and their families, and, after listening to their trials and tribulations, came to realise that nystagmus can impact upon an individual greatly. Hearing these recalls from people steered her into an interest in quality of life and how nystagmus affects an individual on a daily basis. Rebecca’s plan for the future is to be able to accurately measure the impact of nystagmus and help others to understand the specific needs of people who have it. Rebecca can be contacted directly at rjm19@le.ac.uk.
Maria qualified in 1998 from St Bartholomew’s Medical School. She has always had an interest in nystagmus and completed a PhD in the development of nystagmus and visual acuity in children at the Institute of Child Health and Great Ormond Street Hospital (awarded 2009), which involved writing a computer program as a novel method of analysing nystagmus waveforms, and applying this to eye movement recordings taken from infants, children and adults with infantile nystagmus (IN).
She has been at Moorfields Eye Hospital since 2012, as a consultant ophthalmologist in paediatrics and strabismus. She is actively involved in developing an eye movements service at Moorfields. She has set up both a research lab (for the assessment of children and adults) aswell as a clinical paediatric nystagmus clinic. The main focus of her research is looking at the development of visual function in IN, the effects of IN on visual function and potential treatments in IN.
Anyone interested in research can contact her at Maria.Theodorou@moorfields.nhs.uk. Otherwise clinical referrals can be made to her directly via GPs (she is based at both Moorfields and Moorfields@Northwick Park)