CVI Society Convention 2019

CVI Society Convention 2019 Review

The annual CVI convention was held on the 15th November 2019, the theme this year being 'Opening Doors'. The following key areas of concern were raised, access to diagnosis, accessing education and wider support for all individuals with CVIs. The convention attracted unprecedented numbers of attendees this year. A full house of parents, carers and professionals, alongside adults and children with the condition attended Future Inns Hotel in Bristol, in anticipation of an opportunity to learn from some of the leaders in the field and also to network professionally and meet others with the condition and their families.

The speakers this year discussed key areas of the CVIs conundrum, this included speeches from one of our young ambassadors, Sophie Tennison and also a young man with CVIs. They both shared their personal experiences of CVIs and how, with the appropriate adaptions and support they are achieving their goals. A parent of a child with CVIs shared their personal story, from getting a diagnosis for their child and the ongoing battles that they and many parents face when it comes to 'Opening Doors' to support for a condition which often isn't identified and understood by many professionals, and therefore its impact may go unrecognised.

Professional contributions this year included Suzanne Little, one of our keynote speakers and QTVIs, Hannah Burnley and Amanda Haythorne, on The Colour Tent Project and the remarkable results occurring when colour tent therapy is used with children.

Cathy Williams, Consultant Ophthalmologist from The CVI Project spoke alongside her colleagues Trudy Goodenough and Anna Pease. They reported back on how the information they have been collating over the past few years is being used and how their team plan to proceed with the project over the coming months.

Professor Gordon Dutton our Patron and second keynote speaker of the day, focused on looking at how CVIs may affect a person's language development and social skills, and how adapting the delivery of spoken language by making it meaningful and slow, could open up the world of verbal communication for many young people with CVIs for whom it was thought to be impossible. He shared an amazing video which demonstrated the success of this approach.

Naomi Dale, Clinical Psychologist of Great Ormond Street Hospital and University College London presented the PhD research findings of Hanna Sakki who had recruited many participants in her study via The CVI Society.

Attendees had the option to attend one of the six workshops on offer during the morning session of the convention. Topics this year included education law, understanding the process of applying for an Education and Health Care Plan and school transport, the Colour Tent Project and how early intervention using tents can make a positive impact for those with severe CVIs. An adult with CVIs currently studying for her PhD in visual arts shared her experiences of how CVIs affect her and how she has made the necessary adaptions to succeed in her chosen subject, also popular as ever was a workshop hosted by Debra Westgate focusing on how sensory integration issues, which are common in children with CVIs can impact on education and behaviour and what could be done to help. Another workshop looked at adaptations made to the home environment of two young people with CVIs which meant that their homes were more accessible and safer for them. A workshop was also held for young people with CVIs and parents/carers, looking at research into apps to help people with CVIs to develop their visual perceptual skills.

It was a fast-paced day, with lots of information for everyone to digest, but we always like to end the conference on a slightly lighter note and the annual raffle was back, even bigger and better that previous years. The amazing Sophie Tennison had been beavering away behind the scenes and had had some amazing prizes donated for the raffle. It is always a fun way to end the day and well done to all of you who won a prize!

Next years date will be announced in late Spring 2020. We are already looking ahead and can't wait to bring us all together for what has to be the one day in the year when we aren't alone and as a collective, we are making a change for the better. We are Opening Doors!

CVI Society

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