Yearly Archives: 2012

Join BUS and Fight for Sight on the “Carrot Walk” and raise funds for Birdshot Research

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Fight For Sight (FFS) is a large charity that funds research into eye diseases. They have often concentrated on eye diseases that affect a large number of people. However, they are now looking at how they can help fund-raise for rare diseases and small charities.

FFS have offered us a place on the programme they are developing for small charities and rare diseases, subject to us finding enough volunteers to qualify.

Here is how it will work: FFS has set up a 15 mile London Nightwalk on 21 September, 2012, starting at 11 pm.  If BUS can find 30 people who are willing to pay £25 each to participate in the 15 mile night walk, and are willing to find sponsors for their walk (each person needs to be sponsored for at least £150), then all the money these people raise will be banked with FFS specifically for research into Birdshot.  This means that, if we manage to get our biobank set up, then researchers who want to use the biobank samples for research into Birdshot can apply to FFS for a small grant to fund the staff and other equipment for that research.  Exciting!!!

Before we can accept this offer, we need to be sure that we can find 30 people.  We are approaching all our members and all ‘Team Birdshot’ (which includes consultants, nurses, low vision experts, etc) to see if we can find the 30 people.

Could you let us know as quickly as possible whether you want to/are interested in undertaking this 15 mile London night walk?  FFS is expecting a very big turn out for this event, and we would really like to participate if at all possible.  21st September is a Friday night, so we could have the week-end to recover!  We might have to wear some silly clothes for the walk – maybe we can all go dressed as birds!

Please, please let us know as quickly as possible whether you want to be involved in this, so we can get back to Fight For Sight.

 

Rea

Birdshot Uveitis Society – Registered No: 1145349

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Dear All,

We are delighted to be able to inform you that we received confirmation of our registered charitable status today. Up until now we have been part of the Uveitis Information Group. The UIG is registered in Scotland and is in the process of becoming Uveitis Information Group (Scotland) and concentrating on its work within Scotland.

Birdshot Uveitis Society is now registered in England and Wales.

We will continue to work closely with the UIG scottish charity and also link where appropriate with Olivia’s Vision which many of you will already know is a new uveitis charity registered in England and Wales, and set up by a parent of a child who has uveitis. It is worth pointing out that Olivia’s Vision supports all types of uveitis – not just uveitis in children and fundraises to help increase the number of uveitis specialists. You can find our more about Olivia’s Vision on their website.

Our registration number is: Birdshot Uveitis Society – Registered No: 1145349.

We will be making changes to our website and information leaflet to reflect this change.

Kind regards

 

ANNIE AND REA

Birdshot Uveitis Society

Artists at Birdshot Day 2010 and 2012

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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.

 

 

 

 

London/SE Meeting 21st January – more details!

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Happy New Year! We hope you had a good festive season.

We are looking forward to seeing everyone on 21st January from 1.30pm at St John’s Hall, New North Road, London N1 6JB. We will be providing tea, coffee and biscuits.

Sandra has very kindly worked out directions to the hall:

 From Old Street Station  10 min walk

  • Exit one, go up stairs to the right and stay on that side and keep going straight.
  • First sign you will see is Brunswick Place  carry on past and you will pass the Premier Inn
  • Next sign Chart Street,  on left side of road you will see City College,
  • Next sign Haberdasher Estate also there is a Barclays Bike station and a Tesco Express.
  • Then you will see a set of traffic lights and a green coloured shop on corner
  • Look to your left and there is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St John’s Hall

From Moorfields Main Entrance  7 min walk

  • Go Right towards Old Street Station
  • At first set of traffic lights cross and go down Provest Street, there is a bus stop from which St John’s Hall is one stop
  • or carry on walking and follow the road round into Vestry Road, near the top of road on left  you will see Nile Street Dentist
  • At top of the road turn left into East Road, you will see Tesco Express and a set of traffic lights with a green coloured shop on corner.
  • Cross at lights and straight in front you is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

From  Moorfields Main Entrance  7 min walk

  • Go left towards Angel, cross the road at the traffic lights, there is a cafe on the corner.
  • Turn into Sheppness Walk, from here you can either:
  • Get 394 bus from the stop opposite the police station to Minton Street which  is about 5 bus stops.
  • Get off the bus at Minton Street and go right past the Beehive Pub.
  • In front of you is a green coloured shop, turn left just before the shop and you will see a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

OR

  • Walk up to traffic lights, turn left into Murrey Grove, half way down there are some shops.
  • At traffic lights at end of road look straight across and you will see GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

If you are definitely planning on coming on the 21st please could you reply “yes” to southeast@birdshot.org.uk so that we have an idea of numbers and please could you also let us know if you are travelling from Kent.

If you need any further information please do not hesitate to contact us, we hope to see everyone on the 21st.

Kind regards

 

Sue, Sandra & Lesley.

Important Note re Grange St Paul’s Hotel Concession

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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