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

 

 

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!

 

 

 

Vitamin D Research

Recent research into Vitamin D  reported in Food Consumer, the Daily Mail, and the Daily Express, amongst many, shows a potentially interesting relationship between Vitamin D levels  and eye health.  The research funded by the Biotechnology and Biological Sciences Research Council (BBSRC) have found that vitamin D reduces the effects of ageing in mouse eyes and improves the vision of older mice significantly.

The research was carried out by a team from the Institute of Ophthalmology at University College London and is published in the current issue of the journal Neurobiology of Ageing.

Professor Glen Jeffery, who led the work, explains “In the back of the eyes of mammals, like mice and humans, is a layer of tissue called the retina. Cells in the retina detect light as it comes into the eyes and then send messages to the brain, which is how we see. This is a demanding job, and the retina actually requires proportionally more energy than any other tissue in the body, so it has to have a good supply of blood. However, with ageing the high energy demand produces debris and there is progressive inflammation even in normal animals. In humans this can result in a decline of up to 30% in the numbers of light receptive cells in the eye by the time we are 70 and so lead to poorer vision.”

The researchers found that when old mice were given vitamin D for just six weeks, inflammation was reduced, the debris partially removed, and tests showed that their vision was improved.

Professor Jeffery said “Researchers need to run full clinical trials in humans before we can say confidently that older people should start taking vitamin D supplements, but there is growing evidence that many of us in the Western world are deficient in vitamin D and this could be having significant health implications.”

Birdshot Uveitis Society is very interested to find out more about this piece of research, particularly as one or two of our members have told us that they believe that vitamin D may have helped their eye problems.    We are contacting the researchers to  find out more about this.

Four important points to note:

  • At this stage there is only scientific evidence that the eye sight of the mouse improves.  There have yet to be trials on humans.
  • Too much Vitamin D can be harmful, so it needs to be monitored.
  • We would never advocate that members add in extra supplements without first discussing  with the specialists who treat them.
  • Seemingly harmless supplements can put extra strain on your liver and kidneys or interact with your other medications