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Life with Chiari conference

On 4 November 2017, Brain & Spine Foundation organised a one-day conference for adults affected by Chiari malformations and associated conditions

I just wanted to say a big thank you to all the team for Saturday’s Chiari Conference. It really was a very special day, hugely beneficial both for relatives and ‘sufferers’ alike.

On 4 November 2017, Brain & Spine Foundation organised a one-day conference for adult patients affected by Chiari malformations and associated conditions such as syringomyelia. 

The ‘Life with Chiari’ conference saw 120 attendees fill the lecture theatre at the National Hospital for Neurology and Neurosurgery, Queen Square, London. Patients, their family and friends, came from all parts of the UK to hear experts talk about Chiari malformations and how to manage life with this condition.

It was also an opportunity for many patients to interact with others affected by similar experiences. We were really pleased to receive very positive feedback on the conference from those who attended. 92% of attendees who filled in the evaluation form considered the event to be either ‘good’ or ‘very good’ overall. 

Speakers

Mr Graham Flint, Consultant Neurosurgeon, Queen Elizabeth Hospital, Birmingham, Chair for the day and main speaker

Simon Thompson, Consultant Nurse, The National Hospital for Neurology and Neurosurgery, London

Dr Anna Mandeville, Consultant Clinical Psychologist, The National Hospital for Neurology and Neurosurgery, London

Kayleigh Salter, a Chiari malformation patient

Susannah Worby, Clinical Specialist Occupational Therapist in Neurosurgery, The National Hospital for Neurology and Neurosurgery, London

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Presentations and media resources

The speakers at the conference were kind to allow their presentations to be made available to the general public so that those who were not able to attend would still have access to these information resources. The event was also filmed by Chocolate Films Video Productions and videos will be made available as soon as we have them.

Diagnosis, treatments and latest research, with Graham Flint (to be made available)

Hydrocephalus and shunts - Simon Thompson

Pain Management - Dr Anna Mandeville

A patient’s perspective on Chiari with Kayleigh Salter. (Kayleigh did not have a PowerPoint presentation, but her talk was filmed and will be made available)

Promoting functional independence within day to day life - Susannah Worby

BSF's Helpline and Information Manager Angela Collett, Neurosurgeon Consultant Graham Flint and BSF's CEO Alice Doyle

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Thank You

The conference was kindly supported by United Business Group. Managing Director, Terry Woods attended the event with his wife, Barbara.

I am honoured to be supporting the conference personally as well as in a business capacity. As a sufferer of Chiari myself, I understand how important this day will be for everyone attending.- Terry Woods

 

Thanks also to Peter Sutton and the team at Queen Square Enterprises for their help in enabling us to use this fantastic venue for our event.