Professor Gordon Dutton - Emeritus Professor of Visual Science at Glasgow Caledonian University, Patron and Advisor of the CVI Society. Professor Dutton is an international authority on the subject of cerebral visual impairments. He is in great demand as a speaker internationally on CVI.
Dr Maggie Woodhouse - Cardiff University. Maggie is an expert on visual development in children with Downs syndrome and the eye care needs of children and adults with disabilities. She is interested in how visual impairment affects education and daily living skills and the impact of visual impairment on a child’s development and education
Rebecca Bartlett - Rebecca is Clinical Lead for Low Vision Services Wales. Rebecca is also Clinical Lead the School Pupil Eye Care Service (SPECS) project and module lead for Cardiff University Postgraduate Optometry Low Vision Theory and Practical modules.
Mr Richard Bowman - Consultant Ophthalmologist Great Ormond Street, Specialising in Neuro-Ophthalmology and running CVI Research projects, Advisor to the CVI Society. Richard has been working as a consultant ophthalmologist since 2002 with particular interests in paediatric ophthalmology, paediatric cataract, strabismus, nystagmus and neuro-ophthalmology (paediatric and adult) and cerebral visual impairment. Richard is actively involved in teaching and training. He is fellowship director for the Great Ormond Street Ophthalmology Department and an honorary senior lecturer at the Institute of Child Health. Having worked for many years in Africa, he gained experience in high volume surgery and maintains a strong interest in training and service delivery in the developing world. He is a part time senior lecturer at the International Centre for Eye Health. Richard is active in clinical research and has published nearly 60 papers in peer reviewed scientific journals and speaks regularly at international meetings.
Suzanne Little, Trustee, The CVI Society, CVI Scotland, collaborating in CVI Research projects. Suzanne is a complex needs consultant who has a wealth of experience in working with young people with the most complex needs.
Rachel Pilling - Consultant Ophthalmologist Bradford, collaborating in CVI Research projects, CVI Society Associate. Rachel is a consultant ophthalmologist from Bradford who specialises in paediatric ophthalmology. She was a founder member of the British Emergency Eye Care Society in 2013 and a member of the Oxford Ophthalmological Council since 2015. She has been interested in learning disability eye care for ten years after being invited to join the Royal College of Ophthalmologists Working Party in 2008. She has since been a member and chair of the VISION2020UK Learning Disability committee, publishing guidance on eye care for learning disability for RCOphth and RCGP and developing quality standards for eye departments. She has published widely on aspects of eye care for learning disability and is a regularly invited speaker at national event
John Sanders - Ex Nystagmus Network, CVI Society Associate. John Sanders has been speaking and writing about nystagmus for 30 years. Among other things he is the author of the Tales of Northwick children’s stories about nystagmus. John has nystagmus himself and spent many years as a trustee and chairman of the Nystagmus Network before becoming the charity’s development manager for nearly seven years. He has organised and spoken at nystagmus research events and is a joint editor of “The Challenge of Nystagmus”. John has also worked as a business journalist and translator.
Helen St Clair Tracy - Chair of Trustees, CVI Scotland, CVI Society Associate. Helen is the mother to nine year old Arran who is affected severely by the CVIs, she is Chair of Trustees for CVI Scotland and an Associate of the CVI Society. Helen will be speaking about CVI and behaviours, sharing different experiences many people have shared with her, and suggesting both explanations for the behaviours and practical strategies to help.
Debra Westgate - Advanced Independent Occupational Therapist, Sensory West Ltd, Debra is an Advanced Children’s Occupational Therapist and a member of the Sensory Integration Network and the Association of Child and Adolescent Mental Health. She works as aconsultant for the National Autistic Society and as an Independent Practitioner. She specialises in working with children who have sensory integration difficulties affecting behaviour, self care and access to education.
Cathy Williams, Consultant Ophthalmologist, Bristol, Specialising in Neuro-Ophthalmology and running CVI Research projects. See www.thecviproject.co.uk to find out more about a major project she is involved in at present.
Last but far from least:
Sophie Tennison and Art Oakes, CVI Society Young Ambassadors.
A parent of a child with CVIs.
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The CVI Society’s General Data Protection Regulation (GDPR) Policy
The CVI Society’s General Data Protection Regulation (GDPR) policy is the responsibility of the Data Protection Lead as appointed by the CVI Society trustees.
Personal information means any information that relates to an individual that may be used either directly or indirectly to identify them.
The CVI Society’s GDPR policy statement describing how the CVI Society protects personal information is published on the CVI Society website.
There are two types of information that the CVI Society may store about individuals that it is in contact with.
The CVI Society
Stores general contact information if provided by individuals including: name, email address and telephone number
Stores additional personal information if provided by individuals including: address, email address, occupation, bank details and medical information
Storage of Contact and Personal Information
General contact information provided by individuals is used to communicate with them about CVI Society activities.
A person’s name, address, date of birth, gender, ethnicity, telephone number, email address, bank details (if payment method requires it) and medical information may be collected by the CVI Society to undertake CVI Society activities. These activities include running the annual CVI Society conference and providing support to individuals or their families.
This personal information may be stored either electronically or on paper.
The CVI Society will only keep contact or personal information while the individual is a supporter of The CVI Society or as long as necessary to provide services or support requested by the individual.
The only people that may have access to personal information are the trustees of The CVI Society or individuals appointed by the CVI Society trustees to support the CVI Society activities.
No personal information is passed on to any other individuals or organisations unless:
at the request of the individual
we are legally required to
to preserve the health and safety of any individual
The CVI Society makes use of cloud storage services which includes an email service.
Member’s medical, bank or home address information will not be stored in a cloud service.
If an individual has emailed this information to the CVI Society it will be stored on servers outside of CVI Society control and therefore its responsibility.
Any information stored electronically will be secured by password protection or by restricted physical access to the storage device.
Any information stored on paper will be protected by restricted physical access.
If a data breach means that any contact or personal information has been passed to others without consent, the individual and the CVI Society Data Protection Lead will be informed. The CVI Society Data Protection Lead will determine what further action may be required. Individuals whose data has been compromised will be informed.
Group emails will not reveal an individual’s email address to other members of the email group unless with the individual’s permission or the email address is already known to the other group members.
If photographs are taken at CVI Society events or if the CVI Society wishes to use an individual’s image for publicity and marketing, including on social media, then prior consent will be obtained from the individual. Photographic images will be kept for as long as the individual is a supporter of The CVI Society and the images may continue to be used in future publicity activities. The CVI Society will delete and stop using an individual’s image if a request is made by the individual.
The CVI Society uses several products to analyse traffic to it’s web site in order to understand our visitor’s needs and to continually improve the site for them. The CVI Society only collects anonymous, aggregate statistics.
If an individual joins the CVI Society mailing list, a CVI Society forum, or one of The CVI Society social media groups or provides contact or personal information to us then The CVI Society assumes that the individual consents to the storage, as described in this policy, of the information that they have provided.
If an individual requests to see their contact or personal information held by the CVI Society it will be provided.
The CVI Society will destroy contact or personal information about an individual if requested by them but this might mean that we can no longer provide certain services to them.
The CVI Society will update any contact or personal information that we know to be incorrect.
If you have any questions or concerns about our collection, use or disclosure of your personal information, please get in touch to discuss further.