Sydenham’s Chorea ‘Virtual’ Education and Awareness Event
Friday 26th March 2021
Thank you for your interest in our Sydenham’s Chorea ‘Virtual’ Education and Awareness Event.
Please register by emailing info@sydenhamschorea.org.uk – if you don’t mind, please state whether your interest is professional or personal.
We have a number of exciting speakers lined up including
Adrian Sie
Consultant paediatrician in Lanarkshire, Scotland, and Honorary Senior Lecturer (University of Glasgow). His son, Reuben, developed Sydenham's chorea in 2014, aged 6. Although Reuben had a severe form, and some heart involvement, he has kept well since then with no relapses. Took over this year as Chair of the Sydenham's Chorea Association and charity.
Sameer Zuberi
Sameer Zuberi is a Consultant Paediatric Neurologist at the Royal Hospital for Children in Glasgow, and Honorary Professor of Paediatric Neurology at the University of Glasgow. He is editor of the European Journal of Paediatric Neurology and past president of the European Paediatric Neurology Society. Sameer is a member of the UK Sydenham’s Chorea surveillance study research team. He has actively supported the Sydenham’s Chorea Association at education events with his knowledge and expertise.
Tamsin Newlove-Delgado
Tamsin Newlove-Delgado is trained in both Child and Adolescent Psychiatry and Public Health Medicine. She is a Senior Clinical Lecturer at Exeter University and works with the Children and Young People’s Mental Health Research Collaboration. She is an Honorary Consultant in Public Health Medicine with Public Health England. She is principal investigator on the UK wide surveillance study into Sydenham’s Chorea.
Christine Thomas
Christine Thomas is a qualified Adult Counsellor and parent of a child who has had prolonged difficulties following from Sydenham’s Chorea. Christine and her husband Paul have shared their own and daughter's experiences of living with Sydenham’s Chorea in the hope of helping others. Both are original and active board members of the Sydenham’s Chorea Association, supporting the administration, fund raising and responding to the wide variety of questions and enquiries daily.
Nadine Mushet
Nadine Mushet is a Nurse Specialist and Non-Medical Prescriber for Cumbria, Northumberland, Tyne and Wear (CNTW), Honorary research assistant for Glasgow University with a particular interest in research into Sydenham’s Chorea. She has two publications on this rare condition and is currently working on her third, whilst also supporting the current UK surveillance study. She is founder and a board member of the Sydenham’s Chorea Association and Charity. Nadine supported a group of children with Sydenham’s Chorea to make a DVD of their condition and story, this can be found on the charity website.
Fraser Draper
Fraser Draper is an adult who has lived from childhood with the effects of Sydenham’s Chorea. Fraser is keen to share his experience with others to help their own understanding and learning. He is an active member of the Sydenham’s Chorea Association supporting the general meetings, fund raising and helping to respond to growing numbers of questions around adults with Sydenham’s Chorea, their symptoms and treatments.
Emanuela Ferrarin
Emanuela Ferrarin is a pharmacist and documentalist in an Italian Hospital Patient Library, developing Patient Education and Empowerment programs (CRO, Aviano). Her daughter developed Sydenham’s Chorea in 2013, aged 7. Emanuela has collaborated with the Sydenham’s Chorea Association since 2014, translating the parent information leaflet into Italian. In 2020 she wrote an illustrated eBook about Sydenham’s Chorea for children, "All for take off" (available from the charity website).
The agenda for the event is as follows
Welcome, register and introduction to event [Nadine Mushet]
Sydenham’s Chorea Association and charity [Adrian Sie]
What is Sydenham’s Chorea? Assessment, diagnosis and treatment [Sameer Zuberi]
Experience from Sydenham’s Chorea Italy [Emanuela Ferrarin]
Break
Supporting my child with SC - a parent perspective [Christine Thomas]
SC in adulthood - my story [Fraser Draper]
UK research into SC; surveillance study and more [Tasmin Newlove-Delgado]
Closing and Remaining Questions and Answers
An optional donation for attending can be made here and would be very gratefully received: https://justgiving.com/sydenhams-chorea-association
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