2nd Birdshot Day, 2012 on You Tube

We have now posted  all of the talks from the 2nd Birdshot Day held on 3 March 2012.  To access these, please go to You Tube and type in Birdshot Uveitis Society to find our channel.

Alternatively, click on the links below.

Birdshot Day Speakers

Mike Brace, CBE – The importance of the Birdshot Day

Miss Narciss Okhravi – Introduction to the Birdshot Day

Professor Andrew Dick – Patient, Clinician and Researcher Partnerships

Rea Mattocks – Introduction to BUS

Dr Graham Wallace – The Science of Birdshot

Mr Nigel Hall – Diagnosing, Testing and Monitoring

Professor Miles Stanford – Medication Options

Morning Question and Answer Session

Miss Dhanes Thomas – Introduction to Biobanks

Professor Phil Murray – The National Birdshot Research Network

Lorraine O’Mullane – Appeal for funding Birdshot Research

Julian Jackson – Fight for Sight and funding Birdshot research

Professor Will Ayliffe – Quality of Life Survey for Birdshot

Simon Denegri – Patient involvement in research (INVOLVE)

Mr Carlos Pavesio – Current research into Birdshot

Mr Alastair Denniston – Outcomes of research

Professor Glen Jeffrey – Vitamin D and Inflammatory Diseases

Interviews:-

Kathy Evans Royal College of Ophthalmologists – Talking about BUS

Niss Narciss Okhravi – The National Birdshot Research Network

Annie – Stable Birdshot

Ann – A family with Birdshot

Liam – A family with Birdshot

Helen – Birdshot in Israel

Sandra – Birdshot Effects

Colin – Birdshot Effects

Nick B – In Remission from Birdshot

Nick Collins – Living with low vision

Happy viewing everyone.

 

Food Poisoning and autoimmune diseases

Many research studies have looked at the link between food poisoning and the onset of diseases, either shortly after the food poisoning, or later in life.

Last week, the Daily Mail published a short article by Fiona MacRae, the Science Correspondent, reminding us of this link. The article states that Salmonella, E Coli and other types of food poisoning may have lifelong consequence.  This includes the possibility of autoimmune diseases. The full article can be accessed at:

http://www.dailymail.co.uk/health/article-2117948/Food-poisoning-lifelong-consequences-bugs-linked-host-illnesses.html

This article got us thinking. We know of at least two people who had very very severe food poisoning shortly before the first Birdshot symptoms occurred (one of these people is Rea).

Can anyone else identify this as a trigger to Birdshot? Or can you think of any other possible trigger? It would be really helpful to start collating this information, so we can begin to identify whether there are common ‘triggers’ or a whole range of triggers.

Humberside Local Birdshotter Group and Fundraising

Sue Bridge, a BUS member and a Birdshotter, is setting up a local group for people with Birdshot in the Humberside/Lincolnshire area. She had already set a date for the first meeting, but this had to be cancelled due to bad weather. She is now busy re-organising this first meeting.

Last weekend she and another Birdshotter set up a BUS stall at a local craft fair to advertise Birdshot and to raise money by selling hand made cards and crafts.

Below is a photograph of their stall – it really looks great. This is wonderful publicity for us – any opportunity we can get to help raise the profile of this rare disease helps us along the path of creating more interest and finding better treatments or a cure.

Many thanks Sue for your hard work. Any Birdshotters in the Lincolnshire, Humberside, Yorkshire wanting to attend the local group can email Sue@birdshot.org.uk She is really keen to hear from you.

 

Sue Bridge sells cards at local craft fair

Sue Bridge sells her hand-made cards at a local craft fair for BUS

 

 

 

Birdshot Day 2012 Feedback

Team Birdshot

Above the team of helpers: member of BUS and family and friends, medical students, staff from Moorfields Eye Hospital and the NIHR BRC for Ophthalmology.  Thank you all of you.  We wouldn’t have been successful without all your help.

Below views of the audience (at times the auditorium was completely full) with nearly 200 patients and professional attending.

 

Follow the  links below if you want to see small galleries of  pictures from the day which were all taken by Meike Walcha, NIHR BRC for Ophthalmology at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology.

 

Birdshot Day 2012

Setting up and Registration

Speakers and people involved in the day

Mingling and mixing

Poster Evaluation

Exhibitors on the Day

Art Workshop

Raffle

Birdshot shock

We wanted to share this very moving poem as we are sure it will resonate with most members who will know exactly the experience Margaret is talking about. Margaret was the opening BUS speaker at the 2012 Birdshot Day.    Thank you so much.

Birdshock

In that dark room,

chin cupped,

brow banded,

eyes dilated,

unmoving, dumb

before the bright slitted light.

‘Look up’

‘Look down’

‘To the right’

‘To the left’.

In that blurred

pink-tinged room –

silence.

‘Birdshot’.

Echoing gunshot.

Exploding fear.

Bird wings beat

on ribcage.

Mouth

birdcage-dry.

‘Birdshot’.

In that dark room

a life shot down.

Outside,

in the smeared world,

by the bus stop,

a bird sings.

Margaret Gilmour  February 2012

 

Blind people to lose millions

The Government’s plans to replace Disability Living Allowance (DLA) with Personal Independence Payment (PIP) will remove tens of millions of pounds from blind and partially sighted people.

The criteria for the new benefit fail to recognise that sight loss is a serious disability and that you face extensive extra costs if you can’t see.

Act now to challenge this benefits shake-up that will hit blind and partially sighted people particularly hard.

RNIB’s website carries useful information about the government benefits shake-up and what you need to do to lobby against it by writing to your MPs.  To find out more visit the link below.

http://www.rnib.org.uk/getinvolved/campaign/yourmoney/personalindependence/Pages/PIP_act.aspx

 

‘Clusters’ of Birdshotters? Your help please

With more Birdshotters registering on BUS, we are beginning to develop a better picture of Birdshot.  One of the interesting questions that keeps arising is whether certain geographical areas have more people with Birdshot.

At our Birdshot Day on 3 March, we were quite amazed to find two people with Birdshot from a very small town.  They were equally amazed!  We have also noticed that there are several members who live within a few miles of each other in an urban area and another ‘cluster’ in a northern city – again quite disproportionate to the probable total numbers of people with Birdshot in the UK.

We would really like to build up a more accurate picture of the geographical spread and we can only do this with your help.

We would love to have your postcode (if you have not already supplied us with it) so we can map where you live, and produce a more accurate map of the geographical location of us Birdshotters.  Your postcode will be kept totally confidential – it will only be used to help us identify your geographical location on a map.  Once we have mapped the UK, we will attempt to map other countries too, and begin to build up an international picture.

Please send your postcode to us at info@birdshot.org.uk

We thought you would be interested in seeing the google analytics map of the UK of visitors to the BUS website since September 2010. Of course, not all visits are from Birdshotters, but it certainly identifies areas where the strongest interest is.

 

Thank you in advance to everybody who sends us their postcode, so we can produce a realistic map of the UK to show geographical locations of people with Birdshot.  This will help to make sure research and services are targeted to meet our needs.

 

The Three Tenners

For those of you who came to the Birdshot Day on Saturday, 3 March, you will have heard Mike Brace with his inspirational opening speech to the Day.

Mike is the BUS professional Advisor. He has long experience in running charities, and he is currently the Chief Executive of VISION 2020 UK which is an umbrella organisation that facilitates greater collaboration and co-operation between organisations that work with people who have eye and vision problems. BUS is a member of VISION 2020 UK.

Mike is helping us to ‘grow’ BUS and is our main speaker for any events we hold. He has been blind from a young age, but that has not stopped him becoming a medal winning Paralympian and he was awarded a CBE for services to sport. He is working on the 2012 Olympics and Paralympics.

To celebrate his impending retirement, Mike and two other Chief Executives of charities working with people who have eye problems have decided to take on an extreme challenge to raise money for sight loss causes.

The three of them are calling themselves ‘The Three Tenners’ (and he promises not to sing!). Mike has already competed in a game called Boccia and is about to compete in the Goal Ball challenge this Friday 9 March. He then goes on to a rowing challenge, sailing (he says he hopes to manage this without a seeing guide, so stay out of his way if you see him on the water!), tandem riding, judo, shooting (ohoh – another place to stay away from!), track and field athletics and ‘sound’ tennis.

Mike is truly inspirational and has been such enormous help to us.

If you want to donate to his magnificent fundraising event, go to his Be My Charity page at

http://www.bmycharity.com/3tenners

 

Sirolimus eye injections given orphan drug status

Sirolimus has been given orphan drug status, which suggests that the studies carried out at various institutions have shown positive results. It is still being trialled as  part of a phase 3 study (see attached link.)

This drug given as an invitreal injection, was discussed at the Birdshot Day 2012. We were told that the risk of developing glaucoma and cataracts as an adverse effect of sirolimus may be lower than the risk associated with steroid treatment.

We await more information, but it is possible sirolimus might be a useful alternative treatment for people with Birdshot, especially for those who fail to achieve remission on the Cellcept (mycophenolate mofetil)/ cyclosporin formula.

Carrots Walk – raising money for Birdshot research

BUS is hoping that as many as 50 walkers will sign up and join the Birdshot Uveitis Society Team for the Carrots Nightwalk  which takes place on Friday 21st September 2012 in London.

Click here if you want to sign up as a walker  for the Carrots Nightwalk and raise money for the Birdshot Biobank.   When you are completing the form, please remember to select Birdshot Biobank in the ‘what you want your money used for section’!  Please also let us know that you have registered to support Birdshot Biobank so your Just Giving fundraising page (which you need to set up) can be linked  to our Team Birdshot page . Don’t forget to invite fit friends and family to  join us on the walk to help us achieve our fundraising target.

If you can’t walk but want to support the Birdshot Biobank initiative by making a donation, please go to our Just Giving  Birdshot Team Page where you can make a donation to support all of our fabulous carrots walkers

We have set a target of £12,000 for the team but it would be great if we are able to exceed this.

Read on for further details about the Biobank and the walk.

We are really excited to be working in partnership with Fight For Sight to raise funds for the Birdshot Biobank and research by participating in the Carrots walk – a 15 mile night walk through London, taking place on 21 September 2012 and we really need your help, either by becoming a walker and raising funds, or by donating to our growing ‘Team Birdshot’ of walkers.

The Birdshot biobank is a really exciting development, which will allow us to hold samples of everybody affected by this disease, and allow us to research why we get it, who gets it,  how we can stop it into the future, and how we can find more targeted and less toxic medication to stop us needlessly losing our sight.

We have already had a grant of £15,000 promised us from Fight for Sight who are very keen to help with this initiative, but this is dependent on us finding additional money from elsewhere.  We are looking to find some sponsorship but we need our members help as well to show that this is something which we support.

If you want further information on Fight For Sight, please go to their website at http://www.fightforsight.org.uk

Please see below for further information on the Carrots Walk:

The route:

Carrots NightWalk – See London in the Dark 2012 will take to the streets of London with the aim of raising funds for vital eye research. In 2012 there will be two walks of different distances. The 15 mile NightWalk is available to anyone of 13 years and above. The 6 mile NightWalk is available for all ages.  More information on the routes

Registration fee:

A registration fee of £25 is required to register and we ask you to pledge to raise a minimum sponsorship of £150. There is no registration fee for children under 13 years taking part in the 6 mile walk.

Where your money goes:

By supporting the Carrots NightWalk, every one of our walkers will help to bring us closer to preventing sight loss and treating Birdshot uveitis. This will help to improve the lives of  us Birdshotters and our family members.

Please join us in this great fundraising opportunity which will be great fun.  We can benefit from the larger infrastructure of  Fight for Sight and still really make an impact and obtain publicity, helping to raise the profile of Birdshot Uveitis.

Please do let us know if you need any help setting up your Just Giving fundraising page, by contacting BUS by email.  We can talk you through this process on the phone if required.

 

Annie and Rea