Saturday 21st November 2015
About the event
The NIHR Moorfields BRC hosted an event for patients, relatives, friends and healthcare professionals to learn and ask about Blepharospasm. This is a condition which is characterised by uncontrolled contractions of the muscles around the eye.
At this event, attendees had the opportunity to:
- meet researchers and clinicians who specialise in this field and ask them questions;
- discuss and share experiences of living with blepharospasm;
- find out how to get involved in research, patient groups and fundraising opportunities;
- hear about and discuss current research, how research could be used and how to influence future research priorities.
1. Introduction - Daniel Ezra
Welcome talk – Daniel Ezra
2. What is Blepharospasm?
What is Blepharospasm? - Dr Marie-Helene Marion
3. Medical treatments for blepharospasm
Medical treatments for blepharospasm - Marie-Helene Marion
4. The psychological impact of dystonia
The psychological impact of dystonia - Professor Stan Newman
5. Surgery for Blepharospasm
Surgery for Blepharospasm - Dr Paul Cauchi
6. Patient Discussion Q&A
Patient Discussion Q&A with Daniel Ezra, Marie- Helene Marion, Paul Cauchi, Stan Newman and Doreen Khan Lim
7. Patient Panel
The patient panel explored their individual experiences of being diagnosed; the impact of medication and surgery; and the effect that Blepharospasm can have on employment and relationships.
8. Experiences From a Rare Disease Perspective
Experiences From a Rare Disease Perspective - Miss Rea Mattocks
9. Helping Set The Research Agenda
Helping Set The Research Agenda - Dr Dolores Conroy
10. What is Research?
What is Research? - Dr Catey Bunce
11. Blepharospasm survey: key questions for research
Dr Andi Skilton
- Blepharospasm survey: key questions for research
- Developing a Research Community
12. Thoughts & Experiences
Attendees' Thoughts & Experiences - Dr Andi Skilton and Dr Catey Bunce
13. Blepharospasm Day 2015 - Moorfields Eye Charity
Moorfields Eye Charity - Hannah Bentley
14. Feedback from the interactive posters
Feedback from the interactive posters - Marie-Helene Marion, Nickolas Koutroumanos, Fariha Shafi
Sponsors and support
NIHR Moorfields Biomedical Research Centre
"improving the health and wealth of the nation through research"
The goal of the National Institute for Health Research (NIHR) is to create a health research system in which the NHS supports outstanding individuals, working in world class facilities, conducting leading edge research focused on the needs of patients and the public.