A chance for UK birdshotters to help birdshot research

If you attended the Birdshot Day no 4 recently in London, you will have heard Mr Mark Westcott talk about the British Ophthalmological Surveillance Unit (BOSU) surveillance study of birdshot.

For those of you who couldn’t attend, the BOSU researchers are busy collecting anonymised data on all UK patients newly diagnosed with birdshot. The researchers can then start to calculate how rare birdshot is. They are also recording patients’ eye symptoms at diagnosis.

To get the best results, the researchers want to be sure that they receive details of everybody who could be included in the study.

This is where you can help.

  • Were you diagnosed with birdshot after May 2017?
  • Were you diagnosed with birdshot in UK (England, Scotland, Wales, Northern Ireland)?

If you answered ‘yes’ to BOTH questions, this is what the researchers would like you to do:

  • Ask your consultant if your data has been sent to the BOSU birdshot study investigators. (Your consultant will know about BOSU and its work).
  • If your consultant is not sure if your details have been sent to BOSU, please contact Mr Westcott’s secretary: marilyn.gilbert-campbell@nhs.net  who will check.

Note that this study is only for UK birdshotters diagnosed after May 2017.

Final information for Birdshot day No 4

This is just a short reminder to you all about our forthcoming Birdshot Day if you are registered to attend. A lot of work has gone into the planning and preparation and we are happy to tell you that everything is well under way.

This year, we are delighted to be welcoming many regular birdshotters as well as a good proportion of new people to our 4th Birdshot Day.  You will be amazed to know that we have people travelling from as far away as the US, New Zealand, Malta, Israel, Portugal, Sweden, Switzerland Holland and Germany, as well as from the far corners of the United Kingdom – a truly international occasion.

On the day, the doors will be open from about 9.15am with the first talk starting at 10.00. We will have Birdshot Uveitis Society members, wearing their special T-shirts, downstairs in the hotel lobby area to help guide you up to the conference area on the first floor.

There will be filming taking place in the auditorium sessions, so we will need to ask you to sign a filming consent form (see below).

We always receive a great deal of help on Birdshot Days from the Patient and Public Involvement Team at the National Institute for Health Research (NIHR) Moorfields Biomedical Research Centre. This year, we are very pleased to announce that they will be running an informal lunchtime discussion, chaired by Mr Richard Lee (NIHR Moorfields Biomedical Research Centre)So, if you want to know more about how research is conducted and why it takes so long, or if you have questions about birdshot that you would like to raise in a group discussion, this will be another forum in which you can take part. More information about it can be found here.

To help you get ready, please find the following documents for Birdshot Day which you may like to download and read.

  1. Programme for the day
  2. Biographies of the speakers
  3. Photos of the speakers
  4. How to get to the Grange City Hotel
  5. Filming consent 2018
  6. List of exhibitors 2018

Raffle and BUS merchandise
As usual, there will be a raffle to help raise funds for BUS. Prizes include a Christmas hamper, Johnnie Walker whisky, framed photographs by Robert Connor McPeake,  a Gift basket from the US, goodies from Fortnum and Masons, and a  landscape textile wall hanging.There will also be special Birdshot Day T-shirts, saffron recipe mugs, caps, etc, for sale.

We will also have printed copies of the recently-published Birdshot Survival Guide available.

Please bring cash with you for your purchases as we don’t have the facility to take payments by card.

Transport
We have checked for train cancellations over the weekend of the conference. It seems that the District Line (London Underground) is going to be operating a good service, but depending on where you are travelling from, there will be a few line closures, so it is worth checking this in advance at http://content.tfl.gov.uk/track-closures.pdfl

And finally…
if for any reason you find you won’t be able to attend after all, please do let us know.  We will be finalising numbers in the first week of November, and we like to gauge this as accurately as possible to avoid waste.

The Birdshot Team are all looking forward to meeting you. It is not long to go now!

Annie

for Team Birdshot
info@birdshot.org.uk

4th Birdshot day, 17th November 2018

We are delighted to announce details of the 4th BUS Birdshot Uveitis Day on Saturday 17th November 2018. It will be held at the Grange City Hotel, 8-14 Coopers Row, London EC3N 2BQ, close to Tower Hill Underground station and Fenchurch Street mainline rail station.  This educational day is intended for people with birdshot uveitis, their family members, health professionals who treat people with birdshot, those who research birdshot, or for anybody who wants to learn more about the condition.

This year we have a really exciting programme planned, and as well as our fabulous UK team of birdshot uveitis expert speakers we are also honoured to welcome Professor Jennifer Thorne,  Cross Family Professor of Ophthalmology at the Wilmer Eye Institute, Johns Hopkins Baltimore,  where she is also chief of the Division of Ocular Immunology,  and Dr Marina Mesquida who is an ophthalmologist clinician scientist, now working for Roche Pharma research and early development as Translational Medicine Leader in Ophthalmology.  We are also extremely fortunate to have Professor Russell Foster, who is a professor of circadian neuroscience, the Director of the Nuffield Laboratory of Ophthalmology and the Head of the Sleep and Circadian Neuroscience Institute, Oxford University, for our keynote talk about sleep and how problems with sleeping (or rather lack of it) affect our health.

A two-course buffet lunch, tea and coffee will be provided. The day will close at 5.00pm but we are also planning to organise an informal social get-together afterwards in a nearby pub or bar, to allow even more time for chatting. Details will be announced nearer the day.

Below is the outline programme for the day:

BIRDSHOT DAY NO 4 PROGRAMME

Saturday 17th November 2018 from 10.00am – 5.00pm with registration and coffee from 9.15am.

SESSION 1 Chaired by Professor Miles Stanford

Birdshot ABC: to include information about birdshot uveitis, the immune system and getting the most out of your eye appointment.  Speakers to include: Mr Richard Lee (Bristol and Moorfields), Miss Laura Steeples (Manchester) and Mr Greg Heath (York).

SESSION 2 Chaired by Professor Alastair Denniston

Overview on the world of birdshot research, with Professor Alastair Denniston and Professor Andrew Dick interviewing Professor Jennifer Thorne and Dr Marina Mesquida.

SESSION 3 Chaired by Professor Andrew Dick

Sleep and how it affects your health and immune system: Professor Russell Foster, Professor of Circadian Neuroscience, Oxford University.

SESSION 4 Introduced by Annie Folkard

Living with sight loss: practical tips and apps that may help increase independence if you have started to lose vision. Speakers: Julian Jackson, Chen Yogev from Orcam and Preeti Singla, an expert low vision optometrist.

SESSION 5 Chaired by Professor Alastair Denniston

BUS/Fight for Sight funded research: short update on what we have discovered so far. Speakers include: Dr Graham Wallace, Dr Omar Mahroo, Mr Mark Westcott, Dr Colin Chu and Professor Philip Murray.

SESSION 6 Chaired by Professor Philip Murray

Birdshot – treatment and trials update. Have your say with a professionals and patients panel. Speakers to include: Professor Andrew Dick, Professor Jennifer Thorne and Dr Marina Mesquida, Professor Miles Stanford.

QUESTION TIME Chaired by Professor Andrew Dick. The birdshot panel answers your questions.

AFTER-EVENT SOCIAL We are going to have a social after the main event in a local bar or pub. Please let us know if you think you might like to attend this and we will send you more information about it later.  We are just trying to judge numbers at the moment.

As well as the talks, on the day you will be able to network and socialise with our ‘Birdshot Community’ made up of professionals, people with birdshot and family members.  You will be able to:

  • Learn more about birdshot and the immune system
  • Learn how to get the most from your eye clinic appointment
  • Learn more about the impact of sleep on your immune system and health
  • Meet experts in the field of birdshot and vision impairment
  • Meet other patients with a birdshot diagnosis
  • Ask questions about birdshot
  • Find out about new treatments and research

As before, we will have a range of exhibitors attending.  There will also be interactive sessions in the breaks where you can learn more about the immune system and also talk to people involved in birdshot research.

Please register on line to reserve your place, or print off the Birdshot Day Registration Form 2018 and send it to BUS, PO Box 64996, London SW20 2BL, or return it by email to info @ birdshot.org.uk.

This event is being organised by BUS and members of the National Birdshot Research Network.  We are particularly grateful to Professor Andrew Dick, Professor Alastair Denniston and Karen Bonstein for their help with developing the programme.  We are extremely fortunate to have the continued support of a dedicated group of clinicians and researchers who form the heart of the National Birdshot Research Network.

BUS very much looks forwards to meeting you all on Saturday 17th November 2018.

Annie

for Team Birdshot

Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free, but we do require a £20 refundable registration deposit (plus £1 non-refundable administration fee to pay for postage and Paypal fees). Your registration fee can be returned when you attend the Day, but if you choose to donate your registration fee to help BUS develop the next Birdshot Day, we very warmly welcome this. You can pay your registration fee by using the button below (debit and credit card & PayPal), or by sending a cheque by post to BUS, PO Box 64996, London SW20 2BL.


Please select your ticket option



If you are claiming benefits or on a pension, we will waive the deposit as we do not want to prevent people attending due to financial constraints. Please select this option on the dropdown PayPal button.

Accommodation

If you want overnight accommodation, the Grange City Hotel has offered us a concessionary rate.  Please note that to obtain the special rate, your hotel booking must be made at least one month in advance of the event, as nearer to the date prices will unfortunately go up.     We have been offered a special rate including English breakfast and complimentary upgrade to executive room where available for:

  • Friday 16th November – £119 + vat
  • Saturday 17th November – £139 + vat

The reference people should quote when booking via phone (020 7863 3700) or email city.reservations@grangehotels.com  is CCT1711090.

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

 

 

3rd Birdshot Day Saturday 14th November 2015

Image

We are pleased to announce details of the 3rd BUS Birdshot Uveitis Day on Saturday 14th November 2015.  We will be holding it at the Grange City Hotel, 8 – 14 Coopers Row, London EC3N 2BQ, close to Tower Hill tube station and Fenchurch BR station.  The educational day is intended for people with Birdshot Uveitis, their family members and health professionals who treat people with Birdshot or research Birdshot, or want to learn more about the condition.  We welcome both old and new friends.    A two course buffet lunch, tea and coffee will be provided and the day will be divided into five main sessions which are briefly described below.

SESSION 1Chaired by Professor Andrew Dick

Birdshot Uveitis and where we are now: Medication and keeping yourself well – an interactive panel presentation including a doctor, pharmacist, specialist nurse and chairman with lots of opportunity to ask questions from the floor for example, information about trough levels and blood tests; information about skin problems,  drug interactions; managing stress and how to keep well on treatment.

SESSION 2Chaired by Professor Phil Murray

The importance of partnership and collaboration in research: NBRN and BUS partnership; Fight for Sight and BUS partnership: update on some of the research projects supported to date and the future,  with Q & A’s. Speakers will include Julian Jackson, ( Fight for Sight) and Birdshot researchers: Alastair Denniston, Graham Wallace, Omar Mahroo, Professor Glen Jeffery.

SESSION 3

1) Reducing Stress – an interactive session where Mark Westmoquette shows how mindfulness could help reduce stress including some simple introductory exercises
2) Living with Birdshot – a led workshop where patients share their experiences

SESSION 4Chaired by Professor Miles Stanford

National Birdshot Research Network,  future developments and new research in the pipeline,with short presentations from leading researchers involved in Birdshot related research in both the UK and Holland.   The speakers include consultants and specialist researchers such as: Carlos Pavesio (Moorfields Eye Hospital), Jonas Kuiper, (Department of Ophthalmology and Laboratory of Translational Immmunology, Utrecht)  Pearse Keane (Moorfields Eye Hospital), Andrew Dick and Richard Lee (Bristol University/Bristol Eye Hospital).

SESSION 5

Question Time –  The Birdshot panel of experts answer your questions, with: Andrew Dick, Miles Stanford, Phil Murray, Carlos Pavesio, Pearse Keane, Alastair Denniston, Jonas Kuiper, Richard Lee, John Hall, Annie Folkard and others.

As well as the talks, on the day you will be able to network and socialise with our ‘Birdshot Community’ – made up of professionals, people with Birdshot and family members.  You will be able to:

  • Meet experts in the field of Birdshot
  • Meet other patients with a Birdshot diagnosis
  • Ask questions about Birdshot
  • Ask questions about medication
  • Find out about new treatments and research

We will have a range of exhibitors there  including: Fight for Sight, RNIB, Macular Disease Society, Guide Dogs for the Blind, and Optima Low Vision and others.

Please register on line to reserve your place, or print off Birdshot Day Registration Form and send it to BUS, PO Box 64996, London SW20 2BL, or return it by email to info @ birdshot. org. uk.
This event is being organised by BUS  and members of the National Birdshot Research Network.  We are  particularly grateful to Professor Andrew Dick and Karen Bonstein for their help with developing the programme.  We are extremely fortunate to  have the continued support of a dedicated group of clinicians and researchers who form the heart of the National Birdshot Research Network.

BUS very much look forward to meeting you all on Saturday 14th November 2015.

Annie

for Team Birdshot

Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free,  but we do require a £20 refundable registration deposit (plus £1 non-refundable administration fee to pay for postage and Paypal fees) – your registration fee can be returned when you attend the Day, but if you choose to donate your registration fee to help BUS develop the next Birdshot Day, we very warmly welcome this. You can pay your registration fee by using the button below (debit and credit card & PayPal), or by sending a cheque by post to BUS, PO Box 64996, London SW20 2BL.


Online

Registration



If you are claiming benefits or on a pension we will waive the deposit as we do not want to prevent people attending due to financial constraints.

Accommodation

If you want overnight accommodation the Grange City Hotel has offered us a concessionary rate.  Please note to obtain the special rate, your hotel booking must be made at least 1 months in advance of the day, as nearer to the date prices will unfortunately go up.  Information about this, including the rates can be found at the following link: http://www.grangehotels.com/business/birdshot-uveitis-society/

We are extremely grateful to M3 who have sponsored the printing and distribution costs of the publicity poster.

 

 

 

Birdshot Day Poster – Saturday 14th November 2015

Here is the poster to advertise our forthcoming No 3 Birdshot Day on Saturday 14th November 2015.   The poster has been designed by  David Bethell, one of our trustees and directors, who is also a graphic designer.  As before, David has given his time for free.  M3 Global who are the healthcare marketing company that we helped earlier last year have sponsored the printing costs.  Thank you so much to you both M3 Global and David for their help with this.

If you would like to make sure the poster is put up in the hospital where you are treated, please let us know and we will send you a copy, so you can arrange this for us.  Publicity throughout the UK is most important, as we would like this to be the biggest gathering of people with Birdshot and people interested in the eye condition that has ever been held!

Details of the day and the programme will follow on the BUS website soon, with a link so that you can book your ticket to attend.    We can also email or post the information direct to.  Please get in touch with ub by email to info@birdshot.org.uk to indicate your interest in coming to the day.

The programme is well develped and we will already have some exciting speakers and activities organised. Please put the date in your diary!

Birdshot Poster Pompidou Transport MBP A4B

Boston Birdshot Symposium 2013

Last week we were in touch with Alison Justus from MERSI concerning the video footage of the September 2013 Boston Birdshot Symposium which is going to be made available on-line. We are delighted to report that it should be ready early in the New Year and as soon as we have it, we will post the link on the BUS website.

In the meantime, the PDF below shows the posters that were distributed at the US Boston Birdshot conference.  They describe the latest published Birdshot research coming out of MERSI.

Birdshot Research Posters

The posters are:

  • Assessment of TH1, TH2 and TH17 Cells in Birdshot Retinochoroidopathy: P Yang and C S Foster
  • Combined therapy of cyclosporine A and mycophenolate mofetil for the treatment of birdshot retinochoridopathy: a 12 month follow-up  RA Cervantes-Castaneda , LA Gozalez , M Cordero-Coma, T Yilmaz and CS Foster
  • Regulatory T-Cells in Peripheral Blood of Patients with Birdshot Retinochoroidopathy: S S Siddique, L Amorese, L Almulki, A M Sueves. C S Foster
  • Risk factors associated with relapse of Birdshot Retinochoroidopathy: A E Radwan R Oarujg, U Baheti, M Austin, CS Foster
  • Infliximab treatment of patients with Birdshot Retinochoroidopathy:P Artornsombudh, O Gevorgyan, A Payal, SS Siddique, D C Foster