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

 

Birdshot Day Super Draw!!

This year we are delighted to tell you about our Birdshot Day Super-Draw.

We have some amazing prizes up for grabs with all the proceeds going towards raising funds for the Birdshot Bio Bank.

Some of the prizes include…….

  • Membership for a Day for two at Guards Polo Club with lunch and drinks in the Club House

  • £150 EyeCare Voucher for Specsavers

  • A case of Pink Champagne

  • £100 Voucher for Frame Set and Match

  • A Carluccio’s Hamper

  • A fabulous  quilted patchwork king- sized bedspread made by BUS member Liz McKinnon

………And Many, Many More!!!!!

Tickets will be £5 on the day.

Remember to tell your friends and families to place their  orders with you

Birdshot Day sponsorship and help

BUS would really like to thank the following organisations and companies  for their financial support and help with the Birdshot Day.

Allergan,   Friends of Moorfields, Grange Hotels, John F Hunt, Moorfields Eye Charity, OPTOS, Scope Ophthalmics, SIGMA TAU,  Moorfields Eye Hospital, the National Institute for Health Research and UCL.

Without such generous assistance the day would never have been possible.

Thank you

Annie and Rea

Birdshot Day programme, how to get there & useful info.

Dear Birdshot Friends

If you haven’t registered yet for the Birdshot Day and you want to come,  please do so now.  We are supposed to finalise numbers this week and we don’t want you to be disappointed.

For your information we will be sending the following information to you by email later in the week, and by post for those who don’t use email.

But here is a preview of what we are going to send.

BUS is really looking forward to the event and hope that it will be an enjoyable and informative occasion.

This event will be held in the Wren Suite at the Grange St Paul’s Hotel, 10 Godliman Street London EC4V 5AJ.   The Wren Suite is situated on -2 (minus 2) floor which you reach via the lift.  BUS helpers will be in the main hotel foyer wearing BUS T-shirts to direct you to the conference.

On separate sheets we attach a map and details of how to get to the hotel and also a copy of our programme together with a list of exhibitors and sponsors. (The programme and list of exhibitors could still change.)

Registration for the Birdshot Day will start at 9.30 am and the conference will be opened by Mike Brace CBE at 10.30.

We recommend that you arrive in good time because we have planned a busy day for you which we really hope you will enjoy as well as find useful.

We plan to do a bit of fund-raising on the day so that we can start raising money for the Birdshot Biobank research which we need to get started.  For example there will be a raffle with a number of very attractive prizes.  A separate letter will be sent to you giving you further details.

On arrival you will be asked to fill in a pre-event questionnaire.  So that it is easier for you to complete, you might like to give some thought in advance about how you might answer some of the questions.  For example, why you have come to the Birdshot Day, what you think research for Birdshot should focus on, what you think is the worst thing about Birdshot.

We are going to be filming the conference and a DVD will be produced for training purposes. The filming and web streaming are unlikely to include you, as they will focus on the speakers, however, there is always the chance that you might be included in one of the shots.  We require your permission to include you in the film so, at registration, you will be asked to complete a consent form. If you do not wish to be filmed, please let us know at birdshot@live.co.uk and also when you register, so we can make appropriate arrangements.

Please do let us know if there is anything else you may need in order to attend this day.

We have been very lucky to receive sponsorship from a variety of organisations, which means we are able to hire the venue, provide refreshments and lunch for free.

All of the speakers – patients and professionals, have given their time at no charge.

Please bring with you a pen so you can fill in the paperwork.  Please also bring in a USB storage stick if you want to take away images of your eyes that you can have taken with the unique OPTOS scanners.   This takes no more than 5 minutes and gives a complete scan of your eye, without having to have your eyes dilated!  Rea and I had our eyes scanned at the Euro Retina conference and were most impressed.  We were even more delighted when OPTOS accepted our invitation to join our event on 3rd March and gave us very generous sponsorship as well.

Please email us, should you need any further information at birdshot@live.co.uk.

We do look forward to seeing you all.

 

ANNIE AND REA

 

 

 

 

“My Vision” by Susan Piper – Exhibition at the Birdshot day

We are delighted  to confirm that there is going to be a small exhibition of some recent paintings by one of our Birdshot members at the forthcoming Birdshot day.  This will run alongside the mini art workshop that Jenny Wright will once again be organising for us.  We hope that these initiatives will  add to the diversity and enjoyment of the day.

Here is a little bit about painter Susan Piper and her work to wet your curiosity.

Susan has been painting with passion since 2000 when, having moved to a new home and not knowing many people, she took her Foundation in Art and Design at Alton College in Hampshire – it was the only course she could find that did not have exams at the end of it!  Her distinction gave her the confidence to design and market her own hand-made greetings cards which in turn led to many commissions.

In 2009, Susan was diagnosed with Birdshot (a family tradition as her brother, her father and her father’s cousin had been previously diagnosed with the condition)** which introduced her to the breathtaking, sometimes chilling, retinal photographs and the elegance of OCT images. Finally, after three years, a series of paintings has resulted. Collectively called ‘My Vision’ the series draws to a varying degree on the technical images and symptoms of Birdshot but Susan has also tried to reflect emotional responses to a disease that frustrates even when trying to explain what it is!

A question that niggles for Susan is how much her earlier work was shaped and influenced by undetected Birdshot. More than one artist when questioned on influences has said, “I paint what I see.” In these paintings, Susan has tried to capture what she is trying to see!

Further information about other work can be found at www.shortheathstudios.co.uk.

**  Birdshot Chorioretinopathy running in families is very unusual.  BUS  only  knows of five families where it is known that more than one family member has the condition.  If there are families where more than one person has Birdshot who we don’t know about already,  we’d be very grateful if you could let us know.  Thank you!

 

 

 

Artists at Birdshot Day 2010 and 2012

Jenny Wright attended the first Birdshot Day in 2010 where she ran a small art workshop where anyone could draw what they thought it was like looking through Birdshot Eyes. Jenny has since  published the attached paper which describes what she found out.

We thought that members of BUS  might like to have the opportunity to read  this and think about how you might depict what is going on in your eyes, as a way of keeping a record, or explaining your vision problems to your ophthalmologist.

This is how Jenny describes it:

The paper explains the remit and outcomes of the drawing workshop at the Birdshot Patients Day in London, and includes some of the images that were produced.  As well as expressing what was going on in a patients eye,  it was also useful for medical students and other professionals to have a closer dialogue with those directly affected by Birdshot and helped them to understand the disease process and symptoms.”

The paper has been presented to a number of audiences and the drawings have been exhibited.  Jenny has quietly been helping us to get Birdshot Uveitis better known through this more unusual approach.

Jenny is running a similar workshop at the next Birdshot Day on Saturday 3rd March 2012 and she would love to see images of how you see.  So don’t be surprised if she asks you to sit down and make a drawing.  You don’t need to worry – you don’t have to have any drawing expertise or experience, and it might provide a little light relief to the days other activities.

Painter Susan Piper is also going to be exhibiting some of her paintings which have been inspired by medical images of  her own birdshot eyes.  We hope to have more about this in a later news item.

 

 

 

 

Important Note re Grange St Paul’s Hotel Concession

A number of people have been asking about the accommodation offer at the Grange St Paul’s Hotel for the Birdshot Day and there are two things that we need to clarify:

The rate quoted of £109 plus VAT is per room, whether for single or double occupancy.

If you are interested in staying there on either Friday 2nd, Saturday 3rd or Sunday 4th nights, please do not delay in making your booking.  We have only so many rooms allocated to us, and  you must book a room before Sunday 5th February to be guaranteed this rate.  Please  contact reservations and quote “Birdshot Day” when you make the booking.  The contact details for the hotel are:

10 Godliman Street
London EC4V 5AJ
Tel: +44 (0) 20 7074 1000
Fax: +44 (0) 20 7074 1100

Concessionary overnight rate at Grange St Paul’s Hotel for Birdshot Day

The Grange St Paul’s Hotel have kindly offered us a concessionary rate on the 2nd, 3rd and 4th of March 2012 of £109 plus VAT including a continental breakfast (per night) single or double occupancy.  Please book before the 5th February to be sure of getting this rate.  Please quote “Birdshot Day” when ringing up the hotel reservations department on 02 7074 1000.

This means that if you fancy a weekend break or a night in London at a luxury 5 star hotel, as part of your Birdshot Day experience, there is fabulous accommodation available at  very reasonable rates for central London.

Please do get in touch with us for details of who you should contact about this.

Thank you Grange Hotels !

Happy Christmas everyone!

Annie and Rea

 

 

Next Birdshot Day – book your places now!

We are delighted to be able to invite you to our 2nd Birdshot Day on Saturday, 3rd March 2012.

We will be launching the National Birdshot Research Network and, if we can raise the funds, the National Birdshot Bio-bank. We hope that this will be the start of research into the causes, prevention and treatment of Birdshot. On this Day, you will find out how you can play your part in developing the research, and you will be able to network and socialise with our ‘Birdshot Community’ – made up of professionals, people with Birdshot and family members.

We know that when you attend for your appointments, there is often not enough time to ask all your questions, so we are focusing on allowing you to:

  • Meet experts in the field of Birdshot
  • Meet other patients with a Birdshot diagnosis
  • Ask questions about Birdshot
  • Ask questions about medication
  • Find out about new treatments and research

A two course buffet lunch, tea and coffee will be provided.

Please register on line to reserve your place, or print off and fill in the form found here and send it to us at PO Box 64996, London SW20 2BL.   The Birdshot Day leaflet can also be downloaded here as a word document or as a Birdshot Day Registration leaflet.  You are very welcome to bring a member of your family or a friend with you. We welcome everyone who attended the last event and we hope that many others who want to be involved in research or learn more about Birdshot will attend too.

As before this event is being organised by BUS, Narciss Okhravi and key people from Moorfields. The fact that we have been able to organise our second day and formed the National Birdshot Research Network  is testament to the hard work and commitment of these people.

We are most fortunate to have the continued  help and support of Professor Miles Stanford of Guys and St Thomas’s NHS Trust, Mr Carlos Pavesio, Miss Narciss Okhravi and Mr Mark Westcott from Moorfields Eye Hospital, Professor Andrew Dick of Bristol Eye Infirmary and Professor Phil Murray of Birmingham University.

We very much look forward to meeting you all on the 3rd March 2012

 

REA AND ANNIE

Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free, as we have managed to obtain sponsorship 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 will 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.

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.

Registration