Professional and Family Dravet Syndrome Conference Itinerary

8:30 – 9:00 Registration
9:00 – 9:15 Welcome
Amy Thompson, Trustee – IDEA LEAGUE UK
9:15 – 10:00
  1. Can we predict the severity of epilepsy from the nature of the SCN1A mutation?
  2. Quality of life, and physicians and family attitudes

Dr Sameer Zuberi, Paediatric Neurologist, with an introduction by Ann Maxwell of The Muir Maxwell Trust
10:00 – 10:45 Dravet syndrome in children with no SCN1A mutations.
Dr Rima Nabbout, Paediatric Neurologist
10:45 – 11:15 Tea break
11:15 – 11.30 A parent’s perspective of having a child with Dravet Syndrome
Kate Watts
11.30 – 11.50 Further education
Karen Grist, Deputy Principal, NCYPE Further Education College
11.50 – 12.05 Parent Partnerships
Sheila Henshall
12.05 – 12.35 Q & A
12:35 – 13:35 LUNCH
13:35 – 14.20 Early Diagnosis and Intervention
Dr Elaine Hughes, Paediatric Neurologist
14.20 – 15.05 Ongoing Treatments incl. Ketogenic diet and VNS
Dr Helen Cross, Paediatric Neurologist
15.05 – 15.35 Tea break
15.35 – 15.55 Epilepsy Specialist Nursing – A Case Study
Carolyn Taylor, Paediatric Nurse Specialist
15.55 – 16.15 Your Child in Mainstream School – The Better Futures Campaign
Alison Cornell, Campaigns Coordinator, NCYPE
16.15 – 16.30 How Dravet Syndrome affects Sibling
Alice Williams
16.30 – 17.00 Q&A
17.00 Presentation and close

PLEASE NOTE PRESENTATIONS MAY BE SUBJECT TO CHANGE


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