Yearly Archives: 2018

A chance for UK birdshotters to help birdshot research

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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

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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

Folic acid Q &A – why take it with methotrexate?

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We have just published a short Q&A factsheet about folic acid and methotrexate because this is something that we often get asked about. This is the first in what we plan to be a series of short Q&A factsheets.

There is a link to the folic acid factsheet below. It can also be found in the factsheet section of our website.

https://birdshot.org.uk/wp-content/uploads/Folic-QA-Factsheet-Mar-2018.doc

 

4th Birdshot day, 17th November 2018

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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.

Fundraising initiatives 2018

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Birdshotters and their partners are definitely trying to get more active in 2018.  In the process they are also hoping to raise valuable funds to help pay for some much-needed birdshot research.

We are particularly impressed that Louisa, a recently diagnosed birdshotter from the York area, has decided to take on a massive cycling challenge:  two thousand and eighteen miles in the year 2018.  She is doing this to help celebrate reaching her 50th milestone birthday.  Road cycling is a sport she has only recently taken up, proving that it is never too late to start.

Diagnosed last year, Louisa has also taken to cycling the 30-odd miles  from her home  to her eye appointments at York Hospital.

Louisa cycling

Louisa’s fundraising has already got off to a really good start, but she would be delighted if you should like to help her towards achieving her target.

Here Louisa tells her story to help her fundraising:

London Marathon 2018

Roger Brown is running the London Marathon in April 2018, helping to raise awareness about birdshot uveitis. He is also raising much needed funds for research into birdshot. He fully appreciates the impact that this rare eye condition can have on an individual, as his wife Caroline has been living with birdshot for the last six years. He knows just how tough it has been for her, and for the team treating her, to find effective treatment. Research is desperately needed to find better options to treat birdshot. Birdshot Uveitis Society is delighted that Roger is running in the London Marathon this year. Places in the London Marathon are like gold dust.  To get a place, you have to promise to do substantial fundraising.  For a small charity like the Birdshot Uveitis Society, its tough getting marathon places, so we are delighted to be teaming up with Fight for Sight to do this.

You can click on this link to read Roger’s story in detail.  He’d love it it if you chose to support his marathon run as he needs to raise £2500 to keep to his side of the deal with Fight for Sight.

Victory for Roger – the elation of completing the challenge

Moorfields Eye charity  Eye to Eye walk 4th March 2018

Team Birdshot is also taking part in the Moorfields Eye to Eye 14 mile walk on the 4th March 2018.  If you want to take part in this walking challenge, further details can be found here, and there is also a JustGiving link where you can donate.

 

Moorfields Eye to Eye walk – walking as Team Birdshot

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Following on from last years success, Team Birdshot is taking part in the Moorfields Eye charities walk –  Eye to Eye 2018 walk, both the 14 miles and the 4 miles on Sunday 4th March 2018.  So far we have five people signed up walking for birdshot research, with a couple more people who are currently thinking about it. We’d love it if we can get 30 or 40 birdshotters walking (family and friends welcome) showing our support and enthusiasm for more research for birdshot.

If you would like to join us, please do sign up with Moorfields Eye  charity at:  https://www.moorfieldseyecharity.org.uk/eye-eye-2018 and let them know that you are walking for Team Birdshot.  If you prefer, you can pick up a registration form in the hospital which can then be returned to their office in an attached Freepost envelope. If you can’t find these in the hospital, Gaby in the Moorfields Eye Charity office is the person to go and find.  You may also see Gaby visiting the clinics, as part of her job is to go and meet patients.

Birdshotters can choose to walk either the 4-mile or 14-mile route according to fitness and preferences. Gaby has promised to let us have similar start times so that we can walk together, and that will also allow us to be able to get a great group photo before we set off.

4 miles – £12 to register

14 miles – £18 to register

There is no minimum sponsorship requirement: just raise as much as you can. You also get a free T-shirt and goodies at the end.

The times of the walk vary from 7.30am – 12 midday. If you are planning to do the 14 mile it is a good idea to start reasonably early.

If you want to take part, please sign up as directed above, but also drop me a line to let BUS know.  Here’s hoping for a sunny Sunday on 4th March!

https://www.justgiving.com/fundraising/team-birdshot-uveitis-society

 

 

Updated leaflet about BUS January 2018

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Birdshot Uveitis Society is pleased to publish an updated version of our leaflet about BUS and birdshot uveitis.  It includes some basic information about the eye condition, the society and a simple Gift Aid form if you wish to donate to the charity.

If you want copies of the leaflet, you can print them off yourself to give to friends, family and colleagues so that they can better understand your diagnosis and  know where to go to find out more about the condition.  The leaflet fits on two sides of A4.

 

BUS leaflet updated january 2018