This is an important message especially for members who attended our First Birdshot Day.
We have just emailed out our 6 month post evaluation feedback survey. If you have not received yours, please check your spam and retrieve it, and if it’s not there, please tell us straight away! Continue reading
About 220 staff and their friends and family members attended the annual Moorfields’ Stars ceremony on Wednesday 2 March. The event, which again received overwhelmingly positive feedback from those involved, was designed to recognise and reward staff for personal and professional achievements.
Special awards were presented in recognition of academic success and long service as well as to the winners of the employee of the month scheme during 2010. Awards were also given to the winners of four special categories with the Birdshot Uveitis Patient Day Team receiving the Special Trustees’ team award for innovation in patient care, research or education.
We are absolutely delighted with this news particularly as we received a £1000 donation from the Special Trustees to go towards our next event. This is great news!
At the risk of repetition: “Long live Team birdshot!”
We recently heard about a study that is currently recruiting in Aberdeen and Bristol Eye hospitals. We know of at least one Birdshot patient who has been recruited on this study in the UK and probably there are others. This link takes you to details about the clinical trial.
The objective of this study is to test the Efficacy and Safety of the Human Anti-TNF Monoclonal Antibody Adalimumab in Subjects With Inactive Non-infectious Intermediate, Posterior, or Pan-uveitis.
Adalimumab (also called Humira) is a type of drug known as anti-TNF (anti-tumour necrosis factor). In people with rheumatoid arthritis and some other inflammatory diseases a protein called TNF is overproduced in the body, causing inflammation and damage to bones, cartilage and tissue. Anti-TNF drugs block the action of TNF and so can reduce this inflammation.
Treatment with Adalimumab (Humira) is self-injected normally every two weeks. It may be used in combination with antimetabolites or calcineurin inhibitors. Its effect on uveitic activity can be swift, with benefit sometimes seen within days or weeks. Although not currently licensed for uveitis this drug is already sometimes used in people who have not responded to other treatment.
Annie and Rea
February 28th, 2011 was rare disease day. Actually, rare disease day is, of course, February 29th, but as it’s not a leap year this year, we held it on the 28th. Continue reading
The discovery of an unexpected new mechanism behind the inflammation in rheumatoid arthritis was recently reported in the Journal of Clincial Investigation JAN 25, 2011
It’s all to do with GGTase-I which is found in all cells, but is particularly important for the function of so-called CAAX proteins in inflammatory cells. Apparently GGTase-I attaches a cholesterol-like fatty acid on the CAAX proteins.
Researchers previously believed that a fatty acid played an important role in activating the proteins and could contribute to the functioning of inflammatory cells. The research has shown that they have the opposite effect to what they expected.
The researchers believe that their discovery will contribute towards a greater understanding of the mechanisms involved in inflammatory processes, and help find appropriate medication. Birdshot is believed to be an inflammatory autoimmune disease, just like rheumatoid arthritis. We have always believed that the ‘cure’ for Birdshot is most likely to come from research into one of the other more well known and more common inflammatory auto-imune diseases. Now, with the launch of the Birdshot research network, we have extended the possibilities of finding that ‘cure’!
To read more about the research into GGT-ase1, follow the link at the start of this post.
For those of you who attended the Birdshot Day in September 2010, you will remember that one of the aims was to set up a research network. We are very excited that research has now started at Moorfields Eye Hospital, and at least two of our members are already involved in one of these studies.
The study involves the trialling of a Motion Detection Perception test.
This test will assess your ability to see a moving target on a computer screen, so it is painless and quick and easy to do. Designed by the Institute of Ophthalmology and Moorfields Eye Hospital, it has already successfully been used for detecting early stage glaucoma and the researchers want to see if this test may be equally useful for people with Birdshot.
Real Ale reported he had a long and detailed interview with a researcher and was feeling more optimistic because of the care and trouble being taken. They even arranged for his cataract to be removed because it was going to aid their ability to monitor his birdshot. David reports having a similarly detailed interview with a different researcher.
Both were really impressed with the real interest shown by the researchers. We are really excited by the spin off benefits of these research projects – the raising of the profile of Birdshot, the interest being engendered in researchers and the more focussed care that patients receive as a result.
We are so grateful to ‘Team Birdshot’ – all the consultants, specialists, patients, family members and BUS who set up the Birdshot Day and enabled research to start. We will keep you informed as the research network progresses, and most importantly, we will be letting you know of any opportunities to become involved in research. The current research project is using patients already attending Moorfields, however future research projects will include a much wider range of patients from around the country.
This is a recently published text book about Birdshot by Dr Stephen Foster. It’s available from Amazon in the UK. The content is based on material from the first Birdshot conference held in Boston in 2008 which Rea and I went to. It is available from Amazon. Birdshot Retinochoroidopathy and you can take a look inside the book there and see the type of material it contains.
Sylvain Mignon www.horus-birdshot.fr has set up a Birdshot Foundation in France. He is raising money for Birdshot research in Paris. He told us about this television news item from yesterday’s news round up, which if you speak french or are interesed, you can view here. It is about three and half minutes into the video clip.
http://www.pluzz.fr/jt-local-19-20—champagne-info-2011-02-17-18h50.html
Premier reportage télévisé sur la maladie de Birdshot et sur HORUS BIRDSHOT – le rportage démarre apres 3mn30 d’émission et dure 2mn, merci de vos commentaires.
For English people : first program about the birdshot disease on french TV and specialy on the Horus Birdshot society , in french of course – thanks for any comments.
Rea and Annie, met with the consultants who we are working with to discuss our future research network and the projects that they will undertake.
This is a slow process but we are working hard to get this off the ground.
Below is a picture of us on Monday, when we met. (left to right: Mark Westcott, Miles Stanford, Narciss Okhravi, Rea Mattocks and Annie Folkard.) More about the projects we are trying to get off the ground later….
We are wanting to compile a comprehensive list of Hospitals with ERG facilities which do ERG tests for people with Birdshot Chorioretinopathy and we wondered if any of our members would like to take this task on.
We have a list of hospitals where we know they are done, but we believe that it is by no means comprehensive. It will probably require quite a few phone calls or emails, but there doesn’t appear to be any comprehensive source for this type of information and it would be really useful for us to have it.
Please get in touch with Annie or Rea if you would like to help with this.
Many thanks.
At the moment we have full details for the following:
Offers of help are much appreciated!