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
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:
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:
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.
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:
The reference people should quote when booking via phone (020 7863 3700) or email city.reservations@grangehotels.com is CCT1711090.
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:
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
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.
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
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
BUS recently added a new factsheet which describes the difference between a biologic drug and a biosimilar. It has been posted in both our factsheet section and the in the section which gives information about biologic drugs.
Biologics and Biosimilars what’s the difference? Oct 2017
In addition we have also updated our Birdshot research section adding links to a number of recent papers and removing the outdated links. The new research page can be found at:-
SIGHT VILLAGE LONDON is on from 7th-8th November 2017 at the Kensington Town Hall, Hornton Street, W8 from 9.30-5.30 on 7th and 9.30 – 3.30 on the 8th. It’s a chance to look at an exhibition for blind and partially sighted people and those experiencing age related sight problems. It’s a good opportunity to see the UK’s leading providers of products under one roof. Details of the exhibition can be found on the below pdf file
Sight village information leaflet
BUS received the below request from the RNIB and hope that people in the England might like to take the survey linked to below to help inform our government about eye care services in England:
The All-Party Parliamentary Group (APPG) on Eye Health and Visual Impairment is running an Inquiry during 2017 into the issue of capacity problems in NHS eye care services in England.
The APPG on Eye Health and Visual Impairment is made up of both members of the House of Commons and the House of Lords from all political parties.
The APPG Inquiry needs to hear from patients who have received treatment within the last three years (not including the routine provision of glasses or contact lenses) about their experiences of eye care services in England (both positive and negative experiences). The APPG would welcome responses from families and carers too.
Have your say and complete the patient survey https://www.surveymonkey.co.uk/r/APPG-Inquiry
If you would prefer to take part in this survey over the phone please contact the campaigns hotline on 020 7391 2123 to leave your name and contact number with one of team for a call back.
The survey is voluntary and will take about 15 minutes, is completely anonymous, and will help Parliamentarians make recommendations to improve the commissioning and planning of eye care services in England. We will also use the findings to support the future work of RNIB in improving care for people with eye conditions.
The survey will close on 20th October 2017.
For more information about the APPG inquiry visit https://www.rnib.org.uk/appginquiry/how-to-give-evidence
Finally after months of consultations, NICE has published its guidance and recommendations for adalimumab (Humira) and dexamethasone implants (Ozurdex).
The general information for the public can be found: https://www.nice.org.uk/guidance/ta460/informationforpublic:
We suggest you may also wish to read Recommendations and then, if you want to know more, turn to the Summary from page 19 onwards and finish by reading the ‘Implementation’, section 5 on page 27.
Please also be aware that the process of obtaining Humira (adalimumab) injection and Ozurdex (dexamethasone intravitreal implant) treatment won’t suddenly speed up in England and Wales because the NICE guidance has been published. However, having NICE guidance should make it much easier to obtain Humira or Ozurdex treatment if your consultant says you need it.
Details about these awards are below:
Awards under this scheme are designed to provide support for birdshot clinical research studies only. The studies are to be conducted into any of the charity’s six research priority areas as detailed in the Charity’s Research Strategy 2012-2017. In addition the charity is keen to address the priorities identified by the Sight Loss and Vision Priority Setting Partnership
Fight for Sight is an NIHR Partner Organisation which means that clinical studies we fund are eligible for inclusion in the NIHR Clinical Research Network Portfolio. This allows the study team to have access to clinical infrastructure/NHS Service Support through the NIHR Clinical Research Networks.
Fight for Sight operates a Peer Review system that the charity believes enables an equitable and efficient way to review grant applications. Fight for Sight is unable to provide feedback for the Small Grant Awards Schemes.
The call for “Small Grant Awards” is now open. The closing date for application submissions is 5pm on Wednesday 23 August 2017.
Application must be submitted via our online system grants.fightforsight.org.uk
Late applications will not be considered.