IN-vision

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.

Trustees

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 4 Trustees who have a range of business, financial and management experience.

Our trustees are:

• Liz Charter Founder and Chair
• Angela Burrows Treasurer
• Ray O’Connor
• Kate-Rose Carrick

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 RAP 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 Dr 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 More information about Jay and his work is .

Mr Jay Self BM FRCOphth PhD, 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 3 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 ().

Jay is going to do a skydive on 18th May 2014 for the University of Southampton’s Appeal. This was established with the aim of funding world-class research into the prevention and treatment of blindness. You can sponsor him at

 

 

 

 

 

Disclaimer: The content of this website is correct to the best of the author’s knowledge and it is intended for use as an informational resource only. Do not use any of this information to perform any kind of self-diagnosis or examination. If you have any questions or queries of a medical nature, then please consult your optometrist, GP or ophthalmologist. We are not responsible for the content of external websites.