The National Birdshot Research Network (NBRN)
The National Birdshot Research Network will next meet on Thursday 13th March in London at St Thomas Hospital in the afternoon. The meeting will be from 3.00 – 5.00pm. Amongst other things this meeting will be receiving updates on the three Birdshot research projects that we are helping to fund and discussing the way forward to progress them, so that they will be able to collect samples and information from all people with Birdshot Uveitis in the UK who would like to participate. We will also be considering dates and making plans for the next Birdshot Day. It is possible for one or two BUS members to also come along to this meeting, so if you are interested, please contact Annie via the contact form. We would also welcome interested clinicians and researchers who are not already part of the NBRN.
Birdshot Trustees and Directors meeting
The Birdshot Trustee and Directors meet periodically to help plan and develop the work of the Birdshot Uveitis Society. The next meeting will be held on Tuesday 25th March. We will be finalising plans for our flagship fundraiser the 2nd Birdshot Shoot and Auction on 21st May 2014. Last year’s Shoot raised the fantastic amount of £55,000. This amazing result, exceeding our wildest expectations, means that once the initial work has been done in setting up the Birdshot bio-resource centre and Birdshot database, we have funds available to ensure that data and samples for Birdshotters across the country can be included in the resource so research on a large number of people with Birdshot can get underway. We believe that this will be very helpful to researchers because it will give them detailed information which currently is extremely hard to get for sufficient numbers.
Rare Diseases Day
BUS will be attending an event at the Science Museum on the 28th February for Rare diseases day between 12.00 and 2.00pm. The purpose of the event is to unveil a statue depicting the support of the general public and well known people such as Jenny Agutter for people with rare diseases. Genetic Alliance hopes to stimulate interest from the press and use the event to help raise the profile of everyone who has a rare condition.
The sculpture will go on tour around the country in hospitals and schools to continue to raise awareness of this important cause.
Some of our members have signed up to raise their hands and BUS is very pleased to be supporting this initiative.
Research papers are to be published as a result of our own Birdshot Quality of life study
We are delighted to announce the forthcoming publication of two papers as a result of our Quality of Life Study which many of you took part in. More details will follow after publication.
Barry J A, Folkard A, Denniston A K, Moran E, and Ayliffe W (in press). “Development and Validation of Quality of Life Questionnaires for Birdshot Chorioretinopathy.” Ophthalmology, doi: 10.1016/j.ophtha.2014.01.007
Barry J A, Folkard, A, Ayliffe, W (in press). Validation of a brief questionnaire measuring positive mindset in patients with uveitis. Psychology, Community & Health.
Any members who have time to spare and skills to offer are welcome to volunteer to help BUS. Please do get in touch with Annie if you would like to help in anyway. Suggestions on how you would like to help are welcomed. At the moment we are looking for someone to round-up and co-ordinate our walkers for the Fight for Sight Carrots walk and someone who might take charge and manage reclaiming our GiftAid donations from the Inland Revenue.