There are many things very special about the CVI Society's Annual Conventions, one being a complete mix of parents, people with CVI and professionals supporting them in a wide range of capacities covering teaching, medicine, science, therapies and the charity and voluntary sectors.
This year's CVI Society Convention, held in Northampton (November 2018) had a theme of working together. Chair of Trustees, Janet Harwood, opened the convention in the packed conference hall with a few words followed by Patron Professor Gordon Dutton and Ambassador Sophie Tennison. Sophie gave an enlightening presentation showing her determined approach to conquering the many challenges she faces. Her message was simply to have faith in yourself, to keep trying, to stay positive and (sometimes slowly) eventually you improve at what you're doing and things get easier. This is such an important message - thank you Sophie!
Next, just a few snippets of world leading research. Pioneering inventor of the coloured tents, Suzanne Little presented an update of her work, with design students working on developing the apparatus to make it easier to use. Suzanne's work with coloured tents meant a girl with quadriplegic cerebral palsy became visually aware for the first time in her life. Other ground-breaking work was explained by the CVI Project team, led by ophthalmologist Cathy Williams. Great Ormond Street Ophthalmologist, Richard Bowman, a regular at the convention talked to parents about his next research project.
A parent also spoke about her daughter and how she uses her phone to help in a variety of ways, including using a large number of apps to improve her visual perception.
Gordon Dutton always treats the crowd to a keynote presentation, but this year he surprised everyone with a poem he had written especially for the event. I was giving a workshop so missed the other breakout sessions but have very fond memories of Occupational Therapist Debra Westgate's enthusiastic and popular presentation, and know the expertise of John Saunders in nystagmus and Suzanne Little with children having complex needs are always in demand. This year Janet Harwood also gave a workshop, sharing tips and advice which I know would have been invaluable, as she is the person I invariably turn to for tips and advice!
After lunch we were treated to a talk by Maggie Woodhouse, whose research has shown that many children who have additional support needs do not have spectacles when they would benefit from them. She also showed us how short and long sightedness could be measured without the need for a child to answer questions - all she needs is one second to look in each eye, showing that no child is too disabled for an orthoptic examination. Then, a television producer shared her work to try and make television more CVI accessible, and finally, the wonderful Art Oakes, another Ambassador, talking us through his travels, and the challenges, with great warmth and humour, whilst reinforcing Sophie Tennison's earlier message, to stay positive and keep trying.
Of the speakers, many give presentations on an international platform and are considered world leaders in their field. Janet Harwood, as Chair of the CVI Society, has brought together a team, who come together every year for this unique event, to mix with parents informally, to catch up with colleagues, because they are all passionate about their shared goal - working together, to improve the support and outcomes for everyone affected by CVIs.
Debra Westgate (the OT), the television producer, me (giving a workshop on CVIs and Behaviours), Tim and Charlotte (CVI Society Trustees) are all parents of children with CVI. Plenty of other parents of children were in attendance, some with their children, along with adults with CVI and an array of different professionals. Working together, as is demonstrated by these wonderful conventions, is an incredibly effective approach.
The only problem - finding venues big enough, I know that the convention was over-subscribed and dozens of late applicants were turned away. News for next year's convention is normally announced in the Spring - I'd advise you to book early!
The CVI Society is entirely run by people giving up their spare time to share information and support others.
If you can provide funds for the things we cannot get for free then you can help us to help others.