News

Steroid fuelled fundraising

Clare Wood, a senior project manager based in Newcastle, knows from first-hand experience what living with Birdshot is like because, before her own diagnosis, her father had suffered from the same condition.  Her diagnosis came as something of a shock as she was just 41 at the time, and also because Birdshot is not supposed to run in families.

Clare is fortunate to be under the care of Mr Pandit at Newcastle Royal Infirmary, who looks after quite a number of Birdshot patients.  She had been taking a break from treatment, but following a recent flare, she is currently on aggressive treatment to get it under control again.

Naturally, BUS was delighted when Clare contacted us at the beginning of the year and said that her New Year’s resolution was to raise funds for Birdshot over the course of 2016.

“I’m a busy person and the steroids have given me a real boost, although I really would like to sleep more than 4 hours! My husband and kids (19 &17) are great and support me 100%. I feel that I need to do something, even if it is small, to try and aid research into this blooming disease.  My team at work are fab and are all giving their own time to support the fundraising and me.”

 Clare’s plan is to try and organize a small fundraising event each month, and her daughter has also agreed to take part in the Great North Run this year to help with the fundraising.

Recently we heard back from Clare who has been busy making great plans:

In January, she organised a ‘dress down day’ in her office and raised £70.

In February, she is doing a rare or unusual food tasting for Rare Diseases Day on 29th February.

Other activities which will involve her work colleagues, who like to do things together, include:

  • Cocktail-making classes
  • Bikini boot camp
  • Cookery sessions
  • Comedy night

Her daughter Ella has secured a place in the Great North Run, so we will be setting up her Just Giving page shortly.

On Saturday 15th October 2016, as a grand finale to these fundraising activities, Claire is organising a micro-brewery beer festival.

Clare has roped in her fellow Birdshotter Carly, who also lives in the Newcastle area and whom she met via the Birdshot Uveitis Society, to help with her fund-raising efforts.  Carly is trying to secure raffle prizes for the beer festival from local businesses.  Carly is also organising a work’s event of Rare Diseases day.

These great fund-raising ideas are a wonderful initiative. If Birdshotters in the North East area want to buy a ticket and go to the beer festival and enjoy the festivities, Clare has 175 to sell.   They will be going on sale in July, so if you are interested in going, watch this space!

She is also on the look-out for donations of prizes for the beer festival raffle. If anyone can help, they would be most welcome.

In the first instance, please contact info@birdshot.org.uk and we will put Clare in touch with you.

 

 

News

Navigating the City workshop

BUS has been contacted by Jo Morrison who is working with University College London’s ‘Gene and Cell Therapy Group’ and Moorfield’s Eye Hospital to run a one-day creative workshop, ‘Navigating the City’, at Moorfields on 19 March 2016. The workshop aims to bring together a community of research scientists from UCL with people experiencing sight loss, in order to better understand the ways in which those with visual impairment navigate the city. The outputs from the day will help to inform further research into sight loss.

This workshop is aimed primarily at participants whose vision is impaired by inherited conditions such as Leber’s Hereditary Optic Neuropathy, Stargardt’s Disease, Retinitis Pigmentosa and Chromatopsia, but they have also extended the invitation to people who suffer from Birdshot. It will be a friendly, informal and collaborative activity. Attached is the leaflet that they sent me. Please get in touch with me at info@birdshot.org.uk  or contact Andi Skilton directly (his details are in the below link) if you are interested in going.

Further details here: Navigating the City

News

Birdshot Voices

Dr Tracy Craggs has been listening to people talk about sensitive issues for the past 20 years, including asking Holocaust survivors and members of the armed forces to share their experiences. Her interviews have been used for a variety of educational purposes. She was delighted to be asked to attend our recent Birdshot Day No 3 and listen to some of our attendees talk about their lives since diagnosis.

Birdshot graphic designer David Bethell, has been doing the editing and putting them into a presentable format. David will be adding more when they are ready. It’s very enlightening to listen to each individuals story.  http://www.yungcloud.com/index.php…

The interviews are with:-

  • 5 members of BUS, living with birdshot
  • 1 partner of someone with birdshot
  • Health professionals, treating the condition
  • Exhibitors at the Birdshot Day
  • and Friends of BUS

There are further interviews from our first Birdshot day held in September 2010  which might also be of interest.   https://audioboom.com/users/67238/boos

News

Birdshot T Shirts, Hats, Badges and Bags for sale!

Because of popular demand, the Birdshot Uveitis Society is pleased to be offering the following unique Birdshot promotional items for sale.  Any profit made will be used to support the work of the Birdshot Uveitis Society.

T Shirt

Good quality cotton, available in small, medium, large, X large and XX large.  £10.00 plus postage and packing. Please click on the tab below to select the size you want to purchase, then add to cart. T shirt modelled by BUS member, Joanne at the Birdshot Day No 3.
Birdshot Day 3 Nov 15 052


Size



Black Peaked Cap

These are printed with Birdshot logo in reverse.  They are available in one size,  £5.00 plus postage and packing.  (Hat, modelled below by BUS member,  Robert.)

11221824_10153095734236331_2588353459153584896_n(1) (1)




Cotton Shopping Bag

One size bag measuring 14″ x 16″ with long handles – ideal to have handy for impulse shopping.  £3.00,  plus postage and packing. (Some may remember these bags as we used them at the 2nd Birdshot Day.)
Cotton Shopping bag




Small metal badges Size: 1.5″

£1.00 each, with no additional postage charge.
BUS Badge




 POSTAGE for UK and Europe

There is an additional charge for postage and packing depending on the value of items ordered.

£2.00 for  items up to £10.00 in value

£4.00 for items up to £25.00 in value

£6.00 for items up to £50.00 in value

Over £50.00 in value, please contact us for an accurate postage estimate.

For members in USA or Canada or Australia, it is necessary to add a postage premium to help cover costs.

Please select the number of items you have ordered in order to calculate the extra premium required for shipping goods.  If you are ordering more than three items, please contact BUS to obtain a quotation for an accurate postage cost.


Number of items ordered



Any queries, please contact Annie at info@birdshot.org.uk

News

Survey on potential Birdshot treatments – please help

SURVEY ON PERSONAL EXPERIENCES OF BEING TREATED WITH OZURDEX (dexamethasone) IMPLANT, SIROLIMUS INTRAVITREAL INJECTION OR HUMIRA (adalimumab) INJECTION

BUS has been asked to attend an appraisal meeting of NICE (National Institute for Health and Care Excellence) which will consider making three treatments available to the NHS for treating non-infectious uveitis. The meeting is expected to take place in 2016.

We would really appreciate your help in telling us your experiences if you have had any of the following treatments and we would particularly value hearing your feedback on what you consider to be the advantages and what you think are the disadvantages of these relatively new treatments in comparision to other treatments that you have had for your birdshot:

Ozurdex (dexamethasone) implant
Sirolimus intravitreal injection
Humira (adalimumab) injection

You will find the survey in a word document below.

BUS questionnaire about your experience with Ozurdex, Sirolimus or Humira

It does not matter whereabouts in the world you live: your comments will help BUS to get across to NICE the actual patient experience of having these treatments.

All your feedback and comments will be anonymised.

Thank you in advance for helping UK birdshotters!

Please send your responses by email: info@birdshot.org.uk

or by post to BUS, PO Box 64996, London SW20 2BT

News

New Birdshot posters

Below are links to two posters displayed at the recent Birdshot day.

ERG poster

The ERG poster shows a novel way of displaying ERG results from clinic appointment to clinic appointment, so at a glance you can tell if the situation has improved or if treatment is not working simply by looking at the direction of the graph.

100,000 Genomes Poster

The 100,000 Genomes poster  tells you more about a UK government project.    If we wanted we could apply to have Birdshot included in this analysis.

The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.  The aim is to create a new genomic medicine service for the NHS – transforming the way people are cared for. Patients may be offered a diagnosis where there wasn’t one before. In time, there is the potential of new and more effective treatments. Genomics England, a company wholly owned and funded by the Department of Health, was set up to deliver this flagship project which will sequence 100,000 whole genomes from NHS patients by 2017.  Its four main aims are; to create an ethical and transparent programme based on consent; to bring benefit to patients and set up a genomic medicine service for the NHS; to enable new scientific discovery and medical insights; and to kick start the development of a UK genomics industry.   Do members think that this is something that they would like to be involved in?
News

MP Fabian Hamilton asks should Humira be prescribed for sight threatening uveitis?

The subject of access to Humira and Infliximab was brought to the political arena this week, Wednesday 9th December 2015. Leeds North East MP Fabian Hamilton, who is campaigning on behalf of uveitis sufferer Samara Ullmann tabled a debate which asked the Government’s Life Sciences Minister George Freeman to consider asking the NHS to prescribe Humira.

One of the country’s leading eye specialists at Calderdale Royal hospital in Halifax, Mr Teifi James, has recommended it for Samara – who is already blind in her left eye – however so far NHS England decided not to allow its prescription.

This same issues applies to a few Birdshot Uveitis Society members who desperately need to find a drug they can tolerate and that works to save their sight. NHS England is currently denying them access to Humira and Infliximab.

The below link takes you to the debate and you can listen to the relevant portion of the debate debate if  you select the option on the right side ” Prescription of anti-TNF’s”

http://goo.gl/rtWYbZ

 

News

Birdshot research developments

BUS is delighted to distribute the first Birdshot Research network newsletter which brings up-to-date news of where we have got with our exciting UK Birdshot database and biobank projects.

To find out more about the timescale please find your copy of Birdshot Research News 1 here.

Sue Southworth, our Birdshot research Nurse who is based at Birmingham was appointed in July.  She has been extremely busy working on the ethics for this complex undertaking,  and is working hard towards a timetable of launching the Birdshot database and biobank in April 2016.

Any patient who wants their eye clinic to be involved in this should feel free to tell their consultant of their wishes, and their consultant should in turn be in touch with Sue Southworth to tell her of their interest.     Alternatively you can tell BUS of your interest by filling in the attached expression of interest form and sending it to BUS.

You will  find Sue’s contact details are on the newsletter so print off a copy and take it to your next clinic appointment and give it to your consultant so that you can also be involved.

Currently we have 5 centres who have said they would like to be involved and unfortunately for the time being, because of logistics and ethics,  this project only applies to people with Birdshot Uveitis in England and Wales.

We look forward to hearing from you!

Annie

for team Birdshot