Following our medical advisor, Sophie’s recommendation and introduction, Allison and David hosted a stand at the annual British Paediatric Neurology Association conference (BPNA) in Sheffield, held over 3 days. We arrived by train late the night before, ready for a prompt 9am start—travelling light to be able to carry all the stand essentials, plus David’s ketogenic meals for 2 days! All the charity stands were located in a side hall and the first day was comparatively quiet compared to previous events, as many delegates grabbed a coffee in the main hall between heading off to the various talks. Still we had some interested visitors to our stand and come the next morning, almost a rush at morning tea break! Its great getting to speak with Paediatric Neurologists from all over the UK some who have/have not heard of r(20) and being able to share our information leaflets on diagnosis and signs and symptoms to recognise the syndrome. We hope this face to face engagement continues to raise awareness and will help more patients obtain a diagnosis and be advised of our support group.
The highlight of the meeting was meeting Dr Archana Desurkar from Sheffield Hospital who expressed a keen interest in r(20) having just diagnosed a new r(20) patient herself. She has kindly offered to help us with our research in identifying more r(20) cases around the UK.
Encounters with health professionals such as Archana, as well as liaison with other epilepsy related charities, helps to strengthen our support group and makes these events so worthwhile to attend.