Birdshot day 2018, SESSION 1

Birdshot Uveitis Society (BUS) is delighted to bring you the talks from our Birdshot Day held on 17th November 2018. We are very grateful to the media team at Moorfields NIHR Biomedical Research Centre who have kindly edited and put the presentations together for BUS.

Below you will find the videos of the talks given in Session 1. These provide an excellent introduction to birdshot uveitis and also what is happening to your immune system when birdshot starts to develop. Alastair Denniston’s five-minute talk explains what a ‘Birdshot POEM’ is (Patient Outcomes Experience Measures): a quick snapshot survey about how the patient currently is feeling about their vision.

These five-minute and 10-minute talks explain this complex subject in a way that is easy to understand. The videos may be helpful to show your friends and family if they are interested in finding out more about what your birdshot diagnosis means for you.

Session 1: Introduction to Birdshot and the immune System and the Birdshot POEM

Laura Steeples – “Birdshot Uveitis

Richard Lee – “The immune system explained”

Alastair Denniston – “Birdshot POEM

More about Laura Steeples MBChB(Hons), FRCOphth

Laura is a Consultant Ophthalmologist at Manchester Royal Eye Hospital (MREH). She graduated from the University of Glasgow in 2006 and completed specialist training in the North Western deanery followed by two years of sub-speciality training in uveitis at MREH and Bristol Eye Hospital. Laura was appointed as a Consultant in adult and paediatric uveitis in 2016 and is an honorary lecturer at the University of Manchester. Laura is involved in uveitis research and has been an investigator in several national and international clinical trials. Laura regularly presents at international and national meetings and publishes in peer-reviewed journals. She is an active member of several networks including the Uveitis National Clinical Study Group, Paediatric Ocular Inflammation Group, European Society of Retina Specialists and the Birdshot Uveitis Society. She also contributes to patient safety work for the Royal College of Ophthalmologists.

More about Richard Lee BMedSci, BMBS(Nott), MRCS(Eng), MRCOphth, PhD

Richard is a Consultant Ophthalmologist specialising in uveitis. He has clinics in both Moorfields and Bristol Eye Hospitals. However, he is also an immunologist working to understand how the immune system and the eye interact in the context of diseases such as birdshot. To do this, he supervises and works with teams of clinicians and scientists in the UK (principally at UCL, Bristol and Birmingham) and in the US at the National Eye Institute in Washington DC. His official job title is lead for experimental medicine for inflammatory eye diseases at the UK’s Biomedical Research Centre for ophthalmology, funded by the UK National Institute for Health Research (NIHR) and based at Moorfields
Eye Hospital.

More about Professor Alastair Denniston, MA, MBBChir, MRCP, FRCOphth, PhD

Alastair is Consultant Ophthalmologist (Uveitis and Medical Retina) at University Hospitals Birmingham NHS Foundation Trust and Honorary Reader at the University of Birmingham, UK. Alongside Prof Philip Murray, he leads the Birmingham Regional Birdshot Uveitis Clinic which is utilising novel means of imaging to try to improve detection of active disease. He also leads on the development of the National Birdshot Biobank and the Birdshot Registry (database) with Charlotte Radovanovic, Birdshot database project manager. He was awarded an MRC Clinical Research Training Fellowship in 2006, and completed his PhD in Ocular Immunity in 2009. He regularly publishes research papers in scientific journals and is active in research related to birdshot, with a particular emphasis on improving our ability to monitor the activity of birdshot and other forms of uveitis. To further this work, he established the EQUATOR consortium (www.equator.vision) in 2013 with Mr Pearse Keane. Alastair is keen to promote public awareness and patient engagement with ophthalmic research and has been actively involved with the Medical Research Council (MRC) Max Perutz Science Writing Prize and the British Science Festival.

Next Session(3) https://birdshot.org.uk/birdshot-day-2018-session-3

Birdshot Day 2018, SESSION 3

Professor Russell Foster CBE, FRS, FMedSci

Sleep and the lack of sleep is something that that birdshotters tend to suffer from, so we were delighted and honoured to be able to get the world-renowned professor of sleep and circadian rhythms to be our guest speaker. Below we present his fascinating talk: ‘The eye and regulation of biological time’ which is followed by a series of very interesting questions from the audience in a separate film clip.

More about Russell Foster

Russell Foster is Professor of Circadian Neuroscience, Head of the Nuffield Laboratory of Ophthalmology and Director of the Sleep and Circadian Neuroscience Institute at the University of Oxford. He is a Fellow of Brasenose College, Oxford. Russell’s research interests span the neurosciences, but with a focus on the regulation and generation of sleep and circadian rhythms, and what happens when these systems go wrong across multiple areas of health. He has published over 240 peer- reviewed scientific papers and four popular science books on sleep and circadian rhythms. For his discoveries, he has received multiple prizes and honours, not least election to the Fellowship of the Royal Society in 2008 and the Academy of Medical Sciences in 2013. In 2015, Russell was appointed as a Commander of the British Empire (CBE) for services to science and awarded a DSc from the University of Bristol.

Next session (4)

Birdshot Day 2018, SESSION 4

Living with sight loss is something that every birdshotter worries about. For most of us, our loss of vision is quite gradual. Without treatment, we are liable to become severely sight impaired eventually. With better treatments becoming available, this is fortunately less likely to happen.

Julian Jackson – “Living with Sight loss”

Here Julian Jackson tells us what it is like to live with sight loss. He suffered from retinitis pigmentosa and in his 40’s lost his sight completely. http://visionbridge.org.uk

Below, Preeti Singla, a low vision specialists, tells about how to maximise our vision through the use of apps and equipment that do not have to cost a fortune. A copy of her apps and gadgets handout, is found here: https://birdshot.org.uk/wp-content/uploads/Maximising-your-visual-potential-Handout-2.pdf

Preeti Singla – “Maximising your visual potential

More information about Julian Jackson

After a long career in management consultancy and organising events in emerging markets, followed by five years as Director of Development and then Senior Adviser to a leading eye research charity, Julian launched the social enterprise ‘VisionBridge’ in June 2016, supported by a growing nationwide group of academic researchers, clinician scientists, clinicians and patient advocates. He is building on the work he started in 2014 to promote eye health, increase the awareness and understanding of sight loss and introduce the extraordinary world of eye research to the public, eye health professionals, patients and the wider visually-impaired community across the UK.

Julian lost his sight in 2010 to a retinal inherited disease and therefore has a personal as well as a professional interest in the daily battles being waged in hospitals and universities across the UK to prevent sight loss, treat eye disease, restore sight and improve the quality of life for patients through enhanced rehabilitation.

More information about Preeti Singla MSc MCOptom DipTp (IP) Prof Cert Glauc

Preeti is a Specialist Optometrist with over 15 years’ experience in profession, spanning NHS hospitals, community optometry and as the clinical supervisor for the undergraduate optometry degree at City University, London. She started her career in primary care (‘high street’ or community practice) but quickly realised that her passion lay in secondary healthcare and the management of eye conditions, rather than in screening and the commercial side of optometry. She worked for a number of years across both sectors and then in 2010 made the switch to working in the hospital service full-time. She has worked for The Royal London Hospital Whitechapel, Moorfields Eye Hospital and most recently for Buckinghamshire Healthcare Trust, covering Stoke Mandeville, High Wycombe and Amersham Hospitals. Her work in the hospital sector has covered a broad range of experience in both core optometry clinics and also in an extended role, working alongside ophthalmologists in paediatrics, glaucoma and retina specialities. She has a keen interest in low vision rehabilitation and too on the role of Low Vision Lead at the Royal London, working closely with low vision aid suppliers. Preeti has also written a number of articles the most recent being a series of three articles on low vision.

Next session (5)

Birdshot Day 2018, SESSION 5

Birdshot Uveitis Society and Fight for Sight have co-funded a number of small grants for birdshot research. Here are video updates from the recipients of five of these projects. They were all asked to make sure that their talk was no longer than 10 minutes, with an additional five minutes for questions. Further project descriptions can be found at the following link. https://birdshot.org.uk/funded-birdshot-uveitis-research-projects/

Colin Chu -‘Investigating Birdshot using human induced pluripotent stem cell modelling’

Alastair Denniston – ‘Update of the Birdshot database and biobank’

Omar Mahroo – ‘Update on the RETeval device’

Philip Murray – ‘Health Utility’

Graham Wallace – ‘Update on iron overload’

Mark Westcott – ‘BOSU Study – How many new cases of birdshot each year?’

Further brief details about the speakers

Colin Chu PhD, FRCOphth, MA, BM, BCh, is a National Institute for Health Research (NIHR) Academic Clinical Lecturer at the University of Bristol and Bristol Eye Hospital, working with Professor Andrew Dick on gene therapy and ocular inflammation (uveitis). During ophthalmology specialist training he was awarded a Medical Research Council (MRC) and Fight for Sight Clinical Research Training Fellowship, gaining his PhD with Professor Robin Ali at UCL Institute of Ophthalmology. He has previously undertaken research at the MRC Laboratory of Molecular Biology in Cambridge, the Weatherall Institute of Molecular Medicine in Oxford and at the Save Sight Institute in Sydney.

Professor Alastair Denniston, MA, MBBChir, MRCP, FRCOphth, PhD, is Consultant Ophthalmologist (Uveitis and Medical Retina) at University Hospitals Birmingham NHS Foundation Trust and Honorary Reader at the University of Birmingham, UK. Alongside Prof Philip Murray, he leads the Birmingham Regional Birdshot Uveitis Clinic which is utilising novel means of imaging to try to improve detection of active disease. He also leads on the development of the National Birdshot Biobank and the Birdshot Registry (database) with Charlotte Radovanovic, Birdshot database project manager. He was awarded an MRC Clinical Research Training Fellowship in 2006, and completed his PhD in Ocular Immunity in 2009. He regularly publishes research papers in scientific journals and is active in research related to birdshot, with a particular emphasis on improving our ability to monitor the activity of birdshot and other forms of uveitis. To further this work, he established the EQUATOR consortium (www.equator.vision) in 2013 with Mr Pearse Keane. Alastair is keen to promote public awareness and patient engagement with ophthalmic research and has been actively involved with the Medical Research Council (MRC) Max Perutz Science Writing Prize and the British Science Festival.

Omar Mahroo MA, MBBChir, PhD, FRCOphth, FHEA, is a consultant ophthalmologist with subspecialty expertise in retinal disease, managing patients at Moorfields Eye Hospital and St Thomas’ Hospital. He completed a medical degree and PhD at the University of Cambridge, and post-doctoral research at Cambridge and the Australian National University. He then commenced clinical house officer jobs in Cambridge, followed by ophthalmology training in London. His main research interest is understanding retinal function through electrophysiology. He has received funding from Fight for Sight, the Birdshot Uveitis Society, National Institute for Health Research (NIHR) and Thomas Pocklington Trust. He was recently awarded a £1.1m Wellcome Trust Clinical Research Career Development Fellowship to investigate disease mechanisms in patients with inherited retinal conditions and also the effects of common genetic variants on retinal function in healthy individuals, including variants related to myopia. His research is based at the UCL Institute of Ophthalmology and at King’s College, London where he is Honorary Senior Lecturer. He has been trialling the use of a quick-to-use hand-held electrophysiology device that could help manage patients in clinic.

Professor Philip I Murray MBBS, DO(RCS), PhD, FRCP, FRCS, FRCOphth, undertook most of his clinical ophthalmology training at Moorfields Eye Hospital, London and his basic science laboratory training at the Institute of Ophthalmology, London and the Department of Ophthalmo- Immunology, Amsterdam. He is Professor of Ophthalmology, Institute of Inflammation and Ageing, University of Birmingham. His laboratory research is focussed on understanding:


• why intraocular tolerance fails in uveitis
• what immune mechanisms initiate and drive the inflammatory response
• what can one do about it?

He is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.

why intraocular tolerance fails in uveitis
• what immune mechanisms initiate and drive the inflammatory response
• what can one do about it?

He is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.

Graham Wallace, BSc, PhD, is a Senior Lecturer in the School of Immunity and Infection, Birmingham University. He has published over 75 research papers in scientific journals as well as reviews in the fields of ocular immunology, Behҫet’s syndrome and immunogenetics. He has received grants from Guide Dogs for the Blind Association, Fight for Sight, and the Wellcome Trust. He is an enthusiastic communicator on the theme of immune responses in the eye and the effects of gene polymorphisms on ocular diseases. Graham is on the medical panel of the Behҫet’s Syndrome Society and speaks at meetings of patient groups on a regular basis.

Mark Westcott MD, FRCOphth, CCST, is a Consultant Ophthalmologist at Moorfields Eye Hospital, London, where he specialises in uveitis, and also at St Bartholomew’s and The Royal London Hospitals. After residency training in London he spent a Fellowship year in glaucoma at the UCLA Stein Eye Institute, Los Angeles. Thereafter he returned to Moorfields Eye Hospital to undertake a Specialist Fellowship in medical retina and inflammatory eye disease.

Mark has co-authored over 40 scientific papers and regularly lectures both nationally and internationally. He is an honorary Senior Lecturer at the Institute of Ophthalmology, UCL. His research interests include infectious uveitis, birdshot disease and visual dysfunction in glaucoma.

Next session (6)

Birdshot Day 2018, SESSION 6

‘Birdshot Question Time’ – panel of patient and professional experts, chaired by Philip Murray.

An hour-long question time session at the end of the day where a panel of experts, both health professionals and patients, answered questions from the floor as well as questions that had been sent in advance.

Also, one of the consultants gave us written answers to the questions that were asked in our international birdshot Facebook group. You will find a copy of these written answers here: https://birdshot.org.uk/wp-content/uploads/Questions-for-the-Birdshot-Day-final-and-complete.pdf

Professor Philip I Murray MBBS, DO(RCS), PhD, FRCP, FRCS, FRCOphth

Phil is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.

He has published over 180 peer-reviewed papers, contributed numerous book chapters and authored four textbooks, including the highly successful ‘Oxford Handbook of Ophthalmology’. He has a keen interest in undergraduate ophthalmology teaching (previously national lead for the RCOphth), is an adviser to three national uveitis patient groups, helped set up a successful local patient involvement group in uveitis and is an advocate of the ‘patient voice’.

He is a fervent supporter of the English Championship side Brentford FC, and plays baritone sax in ‘Out of the Blue Big Band’ and ‘The Soul Providers’ 

4th Birdshot Clay Pigeon Shoot

For the fourth time in as many years, the beautiful Royal Berkshire Shooting School was the venue for John Hall’s Birdshot Uveitis Charity Clay Shoot day, sponsored by John F Hunt. The weather was not very early June-like, but it did not prevent the 28 teams of four having tremendous fun on the 10 stands provided. Top team, winning engraved whiskey tumblers, were the Greenshield JCB’s ‘Marksmen’ team: James Pengilley, Paul Poulter, Andy Skilton and Alex Cobb, with a superb score of 437, some way ahead of their rivals. Top gun was Paragon’s Richard Estrop of the creatively named ‘Paragon Pigeon Punishers’ team, while Carol Limehouse carried away the prize for Top Lady.

Before the auction, Miles Stanford, Professor of Clinical Ophthalmology at Guy’s and St Thomas’ NHS Foundation Trust, gave a brief talk about the current research being done on Birdshot Uveitis, a rare and potentially blinding eye condition. Lord Archer did the honours as auctioneer, as usual managing to extract money from people but leaving them with large grins on their faces.

The day raised approximately £50,000 for the Birdshot Uveitis Society (BUS). John Hall and all those at BUS would like to say a huge and heartfelt thank you to everyone who contributed to this enjoyable and successful day.

Below is a link to a slide show which gives a flavour for the day.  Photographs courtesy of Chris Warren  www.photoshoot.uk.com and www.chriswarrenphotography.com

 

 

 

Birdshot Day No 3 talks – November 2015

All of the birdshot talks from both Birdshot day No 2 and No 3 are published on the  Birdshot Uveitis Society Youtube channel Birdshot100 at https://www.youtube.com/user/Birdshot100/videos

Session 1

Birdshot – Where we are now: medications and keeping yourself well

Session 2

Fight for Sight and Birdshot Uveitis Society joint small grants initiative and progress updates

Session 3

Session 4

Session 5

Introduction to the National Birdshot Research Network and future developments

 

 

Birdshot Voices

Dr Tracy Craggs has been listening to people talk about sensitive issues for the past 20 years, including asking Holocaust survivors and members of the armed forces to share their experiences. Her interviews have been used for a variety of educational purposes. She was delighted to be asked to attend our recent Birdshot Day No 3 and listen to some of our attendees talk about their lives since diagnosis.

Birdshot graphic designer David Bethell, has been doing the editing and putting them into a presentable format. David will be adding more when they are ready. It’s very enlightening to listen to each individuals story.  https://audiomack.com/artist/birdshot-recordings

The interviews are with:-

  • 5 members of BUS, living with birdshot
  • 1 partner of someone with birdshot
  • Health professionals, treating the condition
  • Exhibitors at the Birdshot Day
  • and Friends of BUS

There are further interviews from our first Birdshot day held in September 2010  which might also be of interest.   https://audioboom.com/users/67238/boos

Announcing Birdshot Day 2012 DVD

Birdshot Day March 2012

Hot News!  The 2012 Birdshot Day DVDs are now available.  They contain all the talks, all the question and answer sessions and individual interviews with patients and professionals.  Compulsive viewing for those of you who were not able to attend the day, and for those of you who want to relive the day.

We are trying to provide the DVD free of charge, but we do need a donation to cover the cost of production, postage and packing.   To order your copy, please email us at info@birdshot.org.uk giving us details of where you want it posted.

Donations for the DVD can be made online through our web page on the B My Charity button:

Donate button

or if you are overseas, via Paypal on our website:

(yellow button below)

Thank you.

The talks and interviews (but not the hour long question and answer session)  are also available online on You Tube at Birdshot100

 

Birdshot Day DVD

The Birdshot Day DVD has finally arrived. It contains recordings of all of the days talks, interviews with people with Birdshot, health professionals, charities and low vision specialists who attended.

Today we have written to everyone who came to the day telling them about it and asking if they want to receive copies. We have written to our consultant specialists to see if they want copies, but we also want to hear from you if you would like to receive a copy as well. (subject to availability!)

We have a limited stock, and what we are suggesting is, rather than charge for the DVD, you can make a small donation to help pay for the postage and packaging costs, with anything left over going towards a future Birdshot Day. To do so, please press the donate button on the website.

If you would like a copy, please email us and let us know where you would like the DVD delivered to. Annie and Rea

 

Credit: David Bethell graphic artist – DVD cover design