Invitation to UK Birdshot Summer Social

As before, this event will be taking place on the beautiful Thames Sailing Barge  ‘Phoenician’ which is situated in St Katharine’s Dock, immediately adjacent to Tower Bridge, London. You are free to drop in at any point during the day, but make sure you are there in time for our speaker at 2.00pm whom we are certain you will not want to miss.

Victoria Makepeace, a member of the Birdshot Society, will give a short talk on nutritional therapy in relation to immune suppressants and Birdshot.  Victoria is a nutritionist and nutritional therapist who just happens to have Birdshot, so it is a subject in which she is very interested and which she has researched in depth for herself.   She will be happy to answer any questions you may have.   You can find out more about Victoria on her website:

As usual, we will be serving drinks and finger food and providing a place where you can chat to others with Birdshot, exchange ideas and information and be part of the Society.

We are extremely fortunate that the interesting and unusual venue for this event is provided by Board member and trustee John Hall. We do hope that as many of you who can easily travel to London and who would like to meet others with Birdshot are able to join us.

We are suggesting a donation of £20 per person for the event, but it will be free of charge to members on benefits or low wage.

Please RSVP to to let us know you will be coming so that we have some idea of the likely numbers.

Local Birdshot Meetings 2016/17

London Social Event with speaker

Speaker: Victoria Makepeace

Venue: The Phoenician, Thames Barge, St Katharine’s Dock London E1W 1LA

On  Saturday 13th August 2016

from  12.00 – 16.00

Manchester Social Event with speakers

Speakers:  To be confirmed

Please see the following link for further details:

Henshaws, Atherton House, 88-92 Talbot Road, Old Trafford, Manchester, M16 0GS

Date Saturday 22nd April 2017

from 11.00 – 15.00

Please do let Annie know if you are thinking of attending either or both of these events so that we can gauge numbers.   email:



North West meet-up: new arrangements

Due to various circumstances, we decided that it would be sensible to postpone our North West meet-up (planned for September) until April next year. We apologise for this change of plan. The proposed date is now Saturday 22nd April, and provisionally we will be holding it at Henshaws in central Manchester, as this provides a convenient location with transport links.  The time will be from 11.00am – 3.00pm.

The meeting is kindly being organized by BUS members Barrie Standish and Nick Bucknell, who are both active members of the Society.

As well as being a social event with lots of opportunity for chat and something to eat, we plan to have a couple of talks, and if possible to run a data and blood collection session for the Birdshot Database and Biobank. We are currently trying to work out the logistics of this to see if this will be possible. If it is, this would enable members from the North West and North East of England to contribute samples and information for future scientific research into Birdshot. Initially, the main centres for sample collection will be in Bristol, London and Birmingham and Manchester,  but we don’t yet have arrangements with other hospitals in the north such as Leeds, Liverpool, Newcastle Sheffield and Yorkshire.

If you are interested in attending, please put the date in your diary and email to allow us to put your name down as someone who is interested in coming along so that we can gauge numbers and make sure the venue is big enough!


Update on Humira and Ozurdex


BUS learned this week that AbbVie, the manufacturer of Humira (adalimumab), has received approval from the European Medicines Agency for an extension of its marketing authorisation for Humira to treat certain forms of non-infectious uveitis. This means that in Europe, including the UK, and also in the US, “Humira is indicated for the treatment of non-infectious intermediate, posterior and panuveitis in adult patients who have had an inadequate response to corticosteroids, in patients in need of corticosteroid-sparing, or in whom corticosteroid treatment is inappropriate.”

AbbVie’s press release is attached here.

The updated ‘Summary of Product Characteristics’ (SPC) – the official product data sheet for Humira – can be found here:

The patient information leaflet for the Humira pen can be found here: PIL Humira July 2016


BUS has also been invited to participate in the NICE Multiple Technology Appraisal which is looking at Ozurdex (dexamethasone) intravitreal implant and Humira (adalimumab) injection with a view to getting NHS funding approved for them to be prescribed for non-infectious posterior uveitis. We are currently preparing our ‘patient organisation statement’ to submit to NICE in August.  We have also nominated a number of ‘patient experts’ and a ‘consultant expert’ and we hope that one or two of them may be invited to put the patient’s viewpoint across at the Appraisal Meeting in February 2017.

We would like to thank those members who took part in our short survey last year about Humira and Ozurdex.  The anonymised information from these questionnaires has been very helpful in preparing BUS’s ‘organisation statement’.

Watch this space as this story unfolds.


BUS is also trying to help get a trial under way to provide the practical evidence that Humira (adalimumab) can work for certain hard-to-treat cases of Birdshot as well as for other complicated, rare forms of autoimmune posterior uveitis.   Our team of experts led by Professor Andrew Dick, Ms Srilakshmi Sharma and Mr Alastair Denniston hope to put in an application in September to the National Institute for Health Research (NIHR) for possible funding, and we will know if we are successful by early next year.  We are all aware we need to provide as strong evidence as possible and in particular to show which groups of patients are best treated or will best benefit from treatment in order to convince NICE and commissioners to support use of expensive treatments for other conditions. The Birdshot team is going to give this its best shot, and we will keep you posted.


Research Study: Genetic polymorphism and outcome in uveoretinitis syndromes (also known for short as GPOUS Study)

This is just a heads up that over the next few months, people with Birdshot Uveitis attending Moorfields and other eye clinics may be asked if they would like to take part in the above study. The aim is to get another 100 people with Birdshot from the Moorfields cohort to join in. On the particular day in June when I was asked, there was at least one other Birdshotter that I know who also took part.

The researchers are looking at a number of different eye conditions, but if they have a largish cohort of Birdshot Uveitis patients, they may well get some useful pointers as to why some cases of Birdshot are more severe than others, and why some are easier to treat. The information may well be useful in helping to determine less toxic treatment strategies.

There are a number of other participating eye hospital sites, including St Thomas’ (London), Birmingham, Bristol, Brighton and Manchester.

It is encouraging that we are managing to utilize the National Birdshot Research Network to get the various different hospitals to work together so that there are sufficient patients that can be studied in a meaningful way.

After I had donated my ’two tablespoonfuls’ of blood, I subsequently had the opportunity to quiz Professor Miles Stanford. I asked him if it would be possible for the information about Birdshotters’ DNA and blood samples to be fed into the Birdshot Database.

The answer, unfortunately, was no, but he indicated that ethical approval had been granted so that the anonymised DNA samples could be retained and used by other researchers to look at other genetic risk factors.

Here is some background information taken from the patient information sheet that the researchers gave me to read, so if a researcher approaches you when you are in the eye clinic and asks you if you are interested in participating, you have a little more information in advance.

Background and Purpose:

Uveoretinitis syndromes are a group of diseases that affect the eye and cause inflammation within it. In approximately half of the cases, the inflammation appears to be confined to the eye, and in the other half it appears in association with inflammation elsewhere in the body, commonly arthritis. It is not a very common disease and if the inflammation gets severe it may threaten vision permanently. In these cases it is necessary to treat patients with drugs which, whilst usually effective, often have unpleasant side effects or require regular hospital visits for monitoring.

We do not know why patients develop these diseases or what causes one patient to have a mild form and another to have a more severe form. Our research over the last ten years has suggested that the outlook for vision is determined in part by the genetic make up of the patient, particularly in a group of genes that control the production of molecules that either make the inflammation worse or others that make it better. It is now possible to target these molecules with specific drugs, so the ability to know whether an individual’s disease is driven by an excess of molecules that cause inflammation or by a lack of molecules that make it better is becoming very relevant for treatment.

The aim of the current research study is to relate the different genes that a patient has to the outcome of their disease at 5 and 10 years. By using various combinations of the genes we hope to produce a test that can predict the outcome of the disease in 5 and 10 years time. If we can do this then we will be able to reassure patients with a good outlook and devise more appropriate treatments for those where the outlook is less good.

 What will happen to me if I take part?

If you do decide to take part, your examination is exactly the same as would happen when you are seen in the eye clinic. After your routine eye examination, we will then ask you to sign a consent form to show you have agreed to take part and we will then take a small blood sample (2 tablespoonfuls) from you for our research study. These samples will then be available to researchers who are investigating the genes and markers that may influence the sort of eye disease that you have and its severity. We will also require your medical history from your GP or hospital records and we will continue to monitor your disease’s progress over 10 years. We will let your GP know that you have agreed to take part in the study

What are the side-effects and possible disadvantages of taking part?

If you take part in the study you will spend longer in the clinic than if you do not, as the doctors will be spending time explaining the study to you and taking the blood sample. There are no other disadvantages to taking part in the study.

What will happen to the blood sample?

The blood sample will be processed in the laboratory to extract the genetic material (DNA) from the cells. This DNA can then by analysed to look for genes that we think may have an effect on the risk of developing uveoretinitis. Your sample will then be frozen in a locked freezer in a secure laboratory.

What will happen to the results of the study?

Any results that emerge from the study will be published in scientific and medical journals. The results from the study will be anonymous and the identity of individuals taking part will not be declared. It will not be possible for you to learn of the results of tests on your blood sample in this study.

 Who is funding the research?

The research is being funded by a grant from the Guide Dogs for the Blind Association and the research will be carried out jointly between St Thomas’ Hospital and the University of Birmingham. Future studies on the blood samples from this collection will be undertaken by various other groups and funded separately. The future use of your sample in other studies will only be allowed if ethical approval for individual projects had been obtained first.

How long will the research last?

The aim is to record how your eye disease progresses over a 5 year period to determine the eventual outcome. We already know from previous studies that the vision at this time predicts the outcome at 10 and, in some cases, 15 years. It is intended that the large number of blood samples generated from this collection will be available for many years afterwards to doctors and scientists as more genes that might cause or influence the severity of uveoretinitis are discovered. However, the identity of the people providing the blood samples would remain unknown to them.

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 and




New Birdshot journal article published

BUS is delighted to announce that a new article which we have been helping to write, along with other much better-known and qualified researchers, has been published in Orphanet Journal of Rare Diseases: “Birdshot chorioretinopathy: current knowledge and new concepts in pathophysiology, diagnosis, monitoring and treatment.”  It is long and quite detailed, but for those who want to know the detail, we think this is really informative and certainly up-to-date.  (May 2016)

Evangelos Minos, Robert J. Barry, Sue Southworth, Annie Folkard, Philip I. Murray, Jay S. Duker, Pearse A. Keane and Alastair K. Denniston. May 2016…/10.1186/s13023-016-0429-8

Orphanet is the European portal for rare diseases:


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

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



Steroid fuelled fundraising

Clare Wood, a senior project manager based in Newcastle, knows from first-hand experience what living with Birdshot is like because, before her own diagnosis, her father had suffered from the same condition.  Her diagnosis came as something of a shock as she was just 41 at the time, and also because Birdshot is not supposed to run in families.

Clare is fortunate to be under the care of Mr Pandit at Newcastle Royal Infirmary, who looks after quite a number of Birdshot patients.  She had been taking a break from treatment, but following a recent flare, she is currently on aggressive treatment to get it under control again.

Naturally, BUS was delighted when Clare contacted us at the beginning of the year and said that her New Year’s resolution was to raise funds for Birdshot over the course of 2016.

“I’m a busy person and the steroids have given me a real boost, although I really would like to sleep more than 4 hours! My husband and kids (19 &17) are great and support me 100%. I feel that I need to do something, even if it is small, to try and aid research into this blooming disease.  My team at work are fab and are all giving their own time to support the fundraising and me.”

 Clare’s plan is to try and organize a small fundraising event each month, and her daughter has also agreed to take part in the Great North Run this year to help with the fundraising.

Recently we heard back from Clare who has been busy making great plans:

In January, she organised a ‘dress down day’ in her office and raised £70.

In February, she is doing a rare or unusual food tasting for Rare Diseases Day on 29th February.

Other activities which will involve her work colleagues, who like to do things together, include:

  • Cocktail-making classes
  • Bikini boot camp
  • Cookery sessions
  • Comedy night

Her daughter Ella has secured a place in the Great North Run, so we will be setting up her Just Giving page shortly.

On Saturday 15th October 2016, as a grand finale to these fundraising activities, Claire is organising a micro-brewery beer festival.

Clare has roped in her fellow Birdshotter Carly, who also lives in the Newcastle area and whom she met via the Birdshot Uveitis Society, to help with her fund-raising efforts.  Carly is trying to secure raffle prizes for the beer festival from local businesses.  Carly is also organising a work’s event of Rare Diseases day.

These great fund-raising ideas are a wonderful initiative. If Birdshotters in the North East area want to buy a ticket and go to the beer festival and enjoy the festivities, Clare has 175 to sell.   They will be going on sale in July, so if you are interested in going, watch this space!

She is also on the look-out for donations of prizes for the beer festival raffle. If anyone can help, they would be most welcome.

In the first instance, please contact and we will put Clare in touch with you.



Navigating the City workshop

BUS has been contacted by Jo Morrison who is working with University College London’s ‘Gene and Cell Therapy Group’ and Moorfield’s Eye Hospital to run a one-day creative workshop, ‘Navigating the City’, at Moorfields on 19 March 2016. The workshop aims to bring together a community of research scientists from UCL with people experiencing sight loss, in order to better understand the ways in which those with visual impairment navigate the city. The outputs from the day will help to inform further research into sight loss.

This workshop is aimed primarily at participants whose vision is impaired by inherited conditions such as Leber’s Hereditary Optic Neuropathy, Stargardt’s Disease, Retinitis Pigmentosa and Chromatopsia, but they have also extended the invitation to people who suffer from Birdshot. It will be a friendly, informal and collaborative activity. Attached is the leaflet that they sent me. Please get in touch with me at  or contact Andi Skilton directly (his details are in the below link) if you are interested in going.

Further details here: Navigating the City